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We Danced All Night to the Best Song Ever

 

 

I remember the day that Victoria came home and said, “When I tell people about dad, I can tell they think we’re a tragedy.”

 

 

I knew exactly what she meant.  I saw it in their faces, too: horror, sadness, fear.  I felt the very same things when those three letters were slapped onto Steve’s future.

 

 

But the thing is:  we’re not a tragedy.

 

 

We’re a triumph (and so are you).   We’re a spectacle of love-against-the-odds and irrational hope and unlikely joy.  My family – out in front where you can see them, and also behind the scenes where you can’t – lives a fairly never-ending dance of joy and sorrow.  I will tell you honestly that holding onto happiness has been the most difficult thing we’ve ever done.  Some days, it’s a fight to the finish and some days it’s as natural as breathing, but every day it’s worth the work.

 

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Alive, loved, satisfied is not just our hashtag.  It’s our strategy for survival.  It’s tattooed on my kids’ arms because it’s a motto that will never change.  The nature of our battles will change, the faces of our Goliaths will change,  but our marching orders will stand.

{Happiness = knowing that we are alive, loved and satisfied.}

 

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When we started planning a fundraiser-within-a-fundraiser (to raise money for our Walk to Defeat ALS team which benefits the ALS Association), we dreamed of an event that was soaked in hope and vibrant with victory. We wanted it to be fun.  And fancy.  And we wanted it to be everything that ALS is not.  In fact, we wanted it to spit right into the face of ALS.

 

 

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Thus, the event that shall henceforth be known as the ALS Fancy Dance.

 

 

 

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We gathered at a beautiful place.

 

 

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With beautiful people.

 

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And there, beneath the starry sky, we danced in the face of fear and frustration.

 

 

 

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We danced, remembering Debi’s dear husband, Randy.

 

 

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And Barb’s dear brother, Randy.

 

 

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And Buck’s sweet sister, Kay.

 

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And we danced for Steve and all those who cannot.

 

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We danced for hope.

 

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And for the dream of a future where the cure is common and the disease is rare.

 

 

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But mostly we danced because we are not a tragedy.

 

 

 

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And life – no matter how treacherous – is still more beautiful than we ever dreamed.

 

 

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Thank you to all who came and danced and hugged and ate and drank and gave.

 

 

{It’s not to soon to Save the Date: September 4, 2015.}

 

 

 

With hope,

 

Bo

 

 

P.S.  We have so far raised just over $16,000 for the Walk to Defeat ALS.  It’s not too late to donate or walk with us this Saturday, September 6 in Central Oregon.  ALSO – I hope this week to write a post addressing some of the reasons why we support the work of the ALS Association and to at least give you my take on the criticism that’s been swirling through the news recently. Stay tuned…

 

To see lots more fun pictures of the dance, check out our Instagram hashtag #ALSfancydance14.

 

 

 

 

 

September 2, 2014 - 8:14 pm

Kristin Motter - Love your most recent blog! Love that you all share joy and hope and love! My prayers and thoughts continue to be with you.

Concerns: We Have Them (And they May Involve Dancing)

 

Friends, countrymen, lend me your ear.

 

I have concerns.  They are thus:

 

Concern # 1.  People no longer understand what it means to dress fancy.

Am I the only one concerned about this?  Because, I am.  Dressing up is a privilege and a delight, I tell you.  I married a man who owned a full wardrobe of neckties and wore one every. Single. Sunday. Dressing up takes us back to the day when men were strong and heroic and women were curvy and feminine and fun.   I’m talking this business here:

 

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And this…

 

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I mean…who is going to argue with these beautiful people?  Dressing fancy is fun and it’s fierce!  The problem is:  there’s no venue for it here in our brewpub town.

 

 

Concern #2: Men and women have forgotten how to dress up AND date.

Dating is good. Dating is fun. Dating isn’t bad.  These principles apply to both single AND married folk alike.  Dating is a good, good thing and dating in fancy duds and dancing a happy dance is good for the soul.  I mean, come on single men – you don’t have to marry her, but you still get to dance with her!  This is good.

 

Concern #3:  ALS is a wretched disease that keeps the best men and women I know from dancing like they were meant to dance.

 

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I’ve been dancing with this guy in the kitchen for 29 years.

 

And so, on August 29, we will come together and solve all these problems in one fell swoop.  Solved!  Dress up. Cut a rug. Bring a date.  Raise some funds for those who cannot dance (I mean…because they have ALS, not because they “can’t dance” like I can’t dance.)

 

We are proud and excited to be hosting the first ever Dance to Defeat ALS – aka: Dance Because You Can.  Deschutes Brewery is providing some lovely beverages. My favorite food truck will be serving up fantastic BBQ and Yo’ Wild will keep the frozen yogurt flowing freely.  The very best dance band in the PNW will keep the music flowing freely.  All proceeds all night benefit the ALS Association – an organization that has been a LIFELINE for our family during Steve’s battle with ALS.  You guys really…I can’t even.  I can’t begin to tell you how much we appreciate them and want to help them with their good, good work.

 

So, now it’s back to you.  Will you help us solve the fashion, dating and disease problems of the generation?  One night.  One dance.  One chance.

 

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We’ll see you there!

 

Dancing our way to a cure,

 

Bo for Team Stern

 

 

P.S.  We came thiiissss close to postponing this event after our friend, Joy, was diagnosed with cancer and her fundraiser was scheduled for the 24th. Please know this:  our love and support is with Joy.  Steve and I can’t attend her fundraiser but you better believe we’re sending a representative from Team Stern and a check! The Bachman family’s need is immediate and essential – if you have to choose just one even to support – PLEASE choose Joy’s.  Thank you.

 

 

P.P.S:  Team Stern receives NO money from this fundraiser. This is all for the ALS Association and our Walk to Defeat ALS Team. If you can’t come to the dance on August 29 or the Walk on September 6, you can donate here.  But we will still miss you and your Macarena moves.

 

 

August 19, 2014 - 6:01 pm

Amy - What an awesome idea! I’m the president (& only fundraiser

August 20, 2014 - 8:26 am

cindi dunn - Oh, Bo! This sounds like an amazing night…can even older folks, (who do remember dressing up for stuff, but haven’t done it in awhile…) come too??? The last time I dressed up, REALLY dressed up for a dance was when I was a senior in High School, prom night, ….I won’t mention the date, but it was awhile back! I love your JOY…it is Jesus in you and Steve being palpable to others…tears in my eyes…I will have my best dress on! :-) Will try to get Don in a suit, but may have to settle for jeans and a sport coat! Love you so! Bring on the BBQ! :-)

August 20, 2014 - 3:04 pm

Tracy - so so so disappointed that we will be out of town, the night before my birthday no-less….ugh! but you can be guaranteed we support you and will be sending funds to support ALS! I love you dearly and miss you mostly!

August 20, 2014 - 7:47 pm

Denise Miller - I am looking forward to both fund raisers…what a great way to help those who are in need and have fun at the same time. God is at work in all of us who love one another.

August 21, 2014 - 5:15 am

Theresa MacNeil - It is first heart wrenching and then devastating. My husband’s grandmother lived for 11 years with ALS. He has since lost an aunt diagnosed with this same beast. She only lived a short time after being diagnosed. During her funeral, the priest did sometimes I had never witnessed. He actually spoke on behalf of her without even making reference to ALS but he made you aware of her struggles and fears. My biggest fear is that someday my husband may face this same thing. He was recently diagnosed with a suspicious tumour in his brain and then told not to worry about it. What if this is something relating to this disease and they missed something. Speak it and it makes it easier to deal with is my motto but my husband does not agree or seem to want to agree as he just does not say a word. Silence itself is a disease. I pray for all those afflicted and hope that this disease will be recognized by those drug companies that only see profit instead of life. Let’s all get together and find a cure. Take care

August 21, 2014 - 9:59 am

MM - New dress, check. New(ish) shoes, check. New hair, check. I can’t wait!

August 25, 2014 - 7:00 am

Kristin Motter - Dearest Bo and Steve,

Before this morning I had never heard of you. I found you via an ALS ice bucket challenge on Facebook. In the short hour or so I have been reading your blog (Bo), I have fallen in love with you and your family. I have been moved in a deep way and found myself praying for you as I have read the ups and downs you have been experiencing through this awful disease.

I appreciate your comments and testimonies and the realness of the struggle of life (literally as well as figuratively). My father has a similar disease called myesthenia gravis. It is not as quick acting as MLS, but the symptomology is similar — muscles weakness leading to “paralysis”. He can have difficulty speaking, swallowing and breathing. There are 9 day hospitalization treatments when this happens, but at some point they will stop working. I am fearing that time is coming nearer than I have ever cared to imagine. So thank you for your realness, for your faith, for your honest expressions of feeling like you have nothing to bring to the battle at times. God IS good. And He DOES carry us when our legs are too weak to carry us.

I want to share the words of a song that has strengthened my faith through my own personal Goliaths in this life. You alluded to it earlier in one of your blogs, Bo. That you can sometimes see that what you are experiencing is creating something bigger in you than you are by yourself. And you can see that this may help others. I am so sorry for the pain and struggle this has been for you both, and for your family. Sometimes life is just unimaginably hard. I had a daughter raped at age 11. That was a huge Goliath. But the Lord saw us through and continues to see us through (it happened 14 years ago now). God is good. Even in pain. Even in fear. Even in desperation. Even in despondency. Even in. God is good.

Here is part of the song, for what it’s worth. It’s from a song titled “Tell Me to Breathe”:

Can it be that I’m really here
Surrounded by your love
I’m ready now to promise you
My hope, my life, my trust

Tell me to breathe
God help me believe
That this moment is real
And not really a dream

This is where
I become me
Right here and now
Tell me to breathe
Tell me to breathe

The part of the song that I always remember in my hardest times is “This is where I become me. Right here and now. Tell me to breathe.”

God will carry you and take you to a higher place in your darkest moments and days. He will take you to grander views because he takes you to a place you could not ever arrive at by yourself.

I will keep all of you in my thoughts and prayers. Thank you for sharing your precious, difficult journey with us. I love you and care for you, and an hour ago I did not even know you existed. Thank you. And thanks be to God.

With love,

Kristin
Saratoga Springs, Utah

August 25, 2014 - 3:24 pm

Amanda Clardy - Dear sweet lady, I have been there in your shoes, I lost my husband 7/24/2009 with ALS, his started in the Bulbar Region, the face or head area, it started with a cold chill, ironic that now they are having the Ice Bucket Challenge? It makes me sick to my stomach, I have cried many a tear since I first heard of what the Doctor told me “ALS is a suffocating death”. A shear brain only to be laid there in a body. My husband, Charles Richard Wilson (Chuck) was 59 at his passing, his first chill was in 2007, and his speech started leaving him, then swallowing, and then a peg tube was inserted in his stomach, and from Jan 2009 he went from 220 lbs, to his death weight at 125. Yes he saw UAB in Birmingham, AL, they were only in the study phase and gave him pills to take, but left no hope, he donated his body to be researched and his ashes were spread on the other side of Birmingham, no marker, no grave site, just under the grass in a field. I pray dear lady that you have made peace with this disease, this taker of life and I pray you remain hopeful, my only regret is that I have twin sons age 30 and an 8 year old granddaughter that might inherit this, yes he did live to see her born and that was a blessing, May God be with you in your trials and may his blessings be with you and your family. I did remarry, and by the grace of God, he has been my blessing thru the depression I have had, but, now I only want to offer you the reality of it all, and only the blessed hope of Jesus, yes my husband pointed upward at his death bed and I asked did he see heaven and he put his thumb up and gave it a yes, and I asked did he see Jesus, and thumbs up yes, so here is your hope and salvation, knowing that if your loved one is saved, there is his/her healing. May God go with you. Amanda

August 26, 2014 - 11:49 am

Amanda P - Great idea for an event. I wish you much success and fun. :)

What An ALS Family REALLY Thinks About the Ice Bucket Challenge

 

 

Well, we are on week two of the very-viral very-everywhere ALS ice bucket challenge.  I know, I know, I can hear the groans…it started out cute and now it’s out-of-control.  Played.  Clogging up social media sites everywhere.

 

I even read this article in which the author called the challenge (that has raised an unprecedented amount of money for one of the most outrageously underfunded diseases) a waste of fresh water. Another headline whined, Is the Ice Bucket Challenge Going to Cure ALS?”  Um, no (and – btw – that’s a stupid bar to set for any fundraiser.)  Critics complain that the challenge is really about feeding our American narcism and does nothing for ALS awareness or funding.  They assert that people should just quietly donate their money and move on with their lives.

 

I get that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease and then realize that it’s nearly invisible to the rest of the world.  As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil. I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?”  Right.  Why does she -a  doctor of medicine – still only know it by Lou Gehrigs Disease?  Because we humans need to associate things with people.  It’s easier that way.  That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money.  And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.  

 

Because here’s the deal: We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof!  Raise a ruckus!  Call all sorts of attention to yourself!  I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.

 

So, fear not, dear reader, this too shall pass and your Facebook newsfeed will go back to cat videos and kids singing Let It Go.  Until that happens, here’s a little reminder about what it’s like to live with ALS and why this level of awareness is like gold to families like mine.

 

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A Mile in ALS Shoes

People ask me often what it’s like to live with ALS. It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.

 

If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

 

    1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
    2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
    3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
    4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
    5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
    6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
    7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
    8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
    9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
    10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.

 

And to my friends living with ALS: please give us more ideas and help us move into your world for a bit. We want to help make your lives rich and full and I’m not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say: you are superheroes and we are in awe.

 

With unending hope for a million-mile cure,
Bo

P.S. If you want to literally walk a mile and help fund research for a cure, sign up to join Team Stern on September 6 for the Walk to Defeat ALS. Lots more on that to come!

August 15, 2014 - 11:16 am

Teresa B. - Cat videos and kids singing Let It Go. Add “political rants” to the mix and that is EXACTLY Facebook. My thought is….”WHO CARES?” Why do some care so much that people are dousing themselves with ice water and raising money for a good cause? I think it’s entertaining and besides, the amount of money that people have raised for ALS in the process is truly a blessing. Some people have nothing better to do than complain. Let them go back to their political rants. Me? I’m going to enjoy watching the ice bucket challenge and if I’m tagged, I’m going to go easy on myself and donate the money :)

August 15, 2014 - 11:18 am

Teresa - Thank you so much for writing this! You said what I couldn’t! I cried reading through those experiences you wrote about because my dad, sister and I went through each one with either my mom (1-17-99) or my brother (11-26-08). I will be sharing this on my FB!

I will be keeping you and your husband in my prayers!

August 15, 2014 - 12:17 pm

Jeannie - I have loved the Ice Bucket Challenges, for a few reasons:

1. It’s fun to watch people plunk a bucket of ice water over their heads.

2. It’s been fun to see people get so involved in something that they might have known nothing about before.

3. It’s awesome knowing behind those challenges flows money and donations.

4. It’s raising awareness for ALS. Unless you know someone personally touched by the disease, it doesn’t get a lot of attention.

5. It’s a unique idea, and, at this point, is only about ALS, not any other worthy cause. We have walkathons for everything; this is uniquely for ALS.

6. And #6 … It’s just entertainment for a good cause.

August 15, 2014 - 1:02 pm

Cindi - I love the ice bucket challenges because it brings focus to ALS. It has gone viral but for a very, very worthy cause. Much more entertaining the the kids singing and the cat videos, and it is raising money for ALS!

August 15, 2014 - 1:16 pm

michael felde - My family has lost 4 members since we carry ALS gene that is hereditary. I feel your pain. We can never feel the pain of those suffering. I have never shared this before now, but I envy them in their passing. They will never have to watch someone suffer and grieve the loss that ALS brings.

August 15, 2014 - 2:07 pm

Shawna - I LOVE the awareness and donations this is bringing to ALS. I do however believe if you are going to pour ice on your head because you care that much about the cause, open your wallet and donate either your time or money, even if it’s $1.00 or 1 hour. This reminds me of the “no makeup” challenge for cancer. People with cancer could care less about makeup. My friend, while battling 3 different types of cancer since the age of 19, wore makeup, but lost all of her hair. If you want to support those with cancer, shave your head and donate your time or money. My father passed on Christmas day 2013 and I helped my mother being the primary caregiver for his last 6 months. I did EVERYTHING for my father, including bathing him, powdering him, applying lotion, cleaning his ears, face, hair and clipping his nose hairs. I dressed him everyday and did his catheter care.I shaved him, toileted him and cleaned him up after his bowel movements. I experienced everything ALS has to offer and more. I watched my father take his last breath. Pouring a bucket of ice over his head would have hurt him, but donating time to him or money to the Disabled Veterans of America or the ALS Foundation would’ve put a smile on his face.I will be participating in the walk in my state in his memory and I will be donating my time and what little money I have because I know he will have a smile this will put a smile on his face in heaven. Watching me do something to fight for the people who have been inflicted with ALS is just as important to me as those people who are truly doing the ice bucket challenge AND donating to ALS.

August 15, 2014 - 2:57 pm

Alan Bredy - I just got tagged by a cousin on the other side of the country. Ha ha, I thought. Then I scrolled down the FB posts and a close friend – very selfless, very caring – shared your post. I read the teaser and thought “this may be my excuse not to do the challenge.” I’ve never known anyone with ALS so I never saw first-hand the misery that comes with it. Your description of your husband becoming entombed in his own body was heart-wrenching and I am so sorry that you all have to deal with the horrors that come with ALS. I will gladly take the “nooooo, not me” challenge and share your article at the same time. People need to know.

August 15, 2014 - 8:10 pm

Jane Lellman - The awareness is the best thing! And the donations are wonderful! But absolutely amazing is that for the first time since my husband’s death I feel hopeful! Hopeful that there will be a cure someday!

August 15, 2014 - 11:11 pm

laurie - Bo, thank you and thank you from Dottie. so we’ll said

August 16, 2014 - 2:11 pm

Cindy Swoope - WoW!!
What a great read! I never knew and am glad I’ve read this strong facted information!
It is heart renching to read how ALS “encombs” a person, your brother, a loved relative;… so deeply into so much pain & suffering.

That amount of pain and suffering certainly needs & deserves millions of more people and millions of more dollars, to bring about so so much more awareness and experiments & cures, and atleast things to help this desease to not be so DEVESTATING!!!

I’m moved & deeply touched from what i have read!

August 16, 2014 - 5:13 pm

Katie Renault - Bo,
Thank you for this short, sweet and to the point article. I have shared it quite a few times when the conversation leads the the Ice Bucket challenge.
After sharing it I feel no need to explain myself further.
Agreed, raise the roof!

August 16, 2014 - 9:05 pm

Whitney Parnell - To Alan Bredy – I’m Bo and Steve’s oldest daughter. Your comment above really touched me, and I want to thank you for your honesty, and your willingness to let your mind be changed. That takes large amounts of maturity and courage, and it’s obvious that you have both. And I know you might never check back and see this comment back to you, but THANK YOU anyway!

August 16, 2014 - 9:45 pm

Beth - Thank you for your blog. My husband suffered wife ALS for 17 years. I would love to hear that they have found a cure. It is a horrid disease to live with. I do have to say, that in our case, our Lord and Savior was amazing. We had friends and family that encouraged, prayed and physically carried us at times. I pray for your family, that God would surround you and bless you.
Beth Risley
Roseburg OR

August 17, 2014 - 2:29 am

Debbie Bell - Thank you Bo I work with PALS and CALS in New England and our foundation could not be more thrilled that ALS is finally being recognized. It’s about time and I’m lovin every challenge I see. Keep it going. Most of out foundation’s monies that come in go directly to patients and their families through our patient programs as this is probably one of the most, not only physically but financially debilitating diseases I know of, and seems to affect just the most wonderful people. Just not fair! Now if we can get the govt to reverse the Medicare law back regarding communication devices. You are an inspiration

August 17, 2014 - 6:35 am

papaya - That was an excellent post.

August 17, 2014 - 6:35 am

Donna Bean Kenyon - Thank you so much for putting into words my thoughts, exactly. I watch every single #icewaterbucketchallenge video that comes across my Facebook. All make me smile, some make me laugh ALL make me proud that so many are participating.
My husband was diagnosed in January 2012. He is the love of my life, my best friend, my hero. He owned his own construction company, was a very talented finish carpenter, played hockey three times a week and loves to fish. No one who doesn’t love an ALS warrior, will understand how heartbreaking it is to watch as one, by one all the things an ALS patient is and loves is ripped away.
So again, I say thank you for putting this out for others.

Bless you and your family,
Donna
Townsend, MA

August 17, 2014 - 7:15 am

Tracey - Thank you for this article. I have not known anyone in my circle or even friend of a friend who has fought this, and this truly brings the day to day challenges sharply into focus.

I love seeing the Ice Bucket Challenge videos, personally…they seem to get more inventive and creative all the time. I was talking with my husband about it this weekend, and I asked him, “Can you think of ANY OTHER FUNDRAISER where people can make fun of themselves, get their friends involved, and STILL raise millions for a very necessary cause?” He couldn’t.

Yes, RAISE THE ROOF!

August 17, 2014 - 7:31 am

Ellen - I am an RN and a few years ago I took care of a patient in the late stages of ALS. The first place it took hold was his lungs. Very devastating!! No one in my company understood it. I learned a lot about the disease. My son (15 years old) was just nominated for the challenge. He came home and was upset because he asked his friends what ALS was because he saw a bunch of kids doing this with no understanding of why they were doing it. None of them could tell him. So, he explained. Now all his friends have a new appreciation for why they just did the challenge. He did it and also donated. It is all about awareness. I feel for what you are going through and try to stay strong. I know it is hard. Love to you and your family.

August 17, 2014 - 7:38 am

Elisa - I was do hoping to read this article but I just wanted to mention it’s nearly impossible to see the light font and small print on mobile. I have perfect vision and I am a heavy iPhone user and I am happy to email myself the link and read it later at my desktop. I am mentioning it because I don’t want you to lose reads/views for that reason. Please consider making it more visible to make your cause more visible. :)

Elisa

August 17, 2014 - 7:59 am

Max P - Simply fantastic post. Your note of being outrageously underfunded is so on spot!! Thank you. And this challenge is simply incredible and no one will ever tell me different. It’s about time that ALS finally can get a sliver of the coverage and attention it deserves.

August 17, 2014 - 8:02 am

Jennifer Gaulin - What I find even more refreshing is that the younger generation are also actively involved in this increasingly popular challenge on social media. They are now being exposed to information about a silent disease . Raising money for an extremely underfunded worthy cause. Knowledge and awareness is power! Bottom line is donations are increasing ! Some people just feel the need to complain!!! It is for a good cause, get over yourself!

August 17, 2014 - 8:23 am

Mike Shannon - If you do that walk, make sure those dollars go directly towards treatment investigation to End ALS. Most walks just go to cover overhead at a local chapter. YOu can demand that your donations go directly to research, and to be earmarked for research. Also, request that the ALS Association begin to spend this windfall of the Ice Bucket Challenge on important drug development. This is a golden opportunity to make a big dent in funding for the right thing.

August 17, 2014 - 8:44 am

Joline Belanger - Thank you so much for the article!!! It really hit home for me. It will be three years tomorrow, August 18th when my mom passed away from ALS. My dad and I were here caregivers up until her last breath. I am glad they are doing this Ice Bucket Challenge. ALS NEEDs this kind of attention….finally! It took the doctors years to finally give my mother the correct diagnosis. My mom spent an entire month in the hospital, doctors not knowing what was wrong w/her. She lost all control in her legs, could not walk anymore. She was in excruciating pain. They practically physical therapied her to death. Kept telling her she had Neuropathy. She turned blue and couldn’t breath anymore. It was Mother’s Day weekend 2011 when she was sent by ambulance from Greenville, ME to Portland, ME for her to see the proper doctors and finally find out what was going on w/her. Took 10 hrs, 5 different doctors to tell her she had ALS. They gave her 1 to 1.5 years to live. My mom after her diagnosis live only 3 mths. I had so much to do in such a small amount of time. Completely uneducated in what ALS was. Had no idea what I was in for. She was completely bedridden within 2 weeks of her diagnosis. I can go on and on about all that my mom, dad and I went thru, but that would take hours. I lived 1 hr away from my parents. I traveled everyday to care for her and then my poor dad, the nights I couldn’t stay had to care for her all by himself. I finally moved my mother here to Jackman, ME ~ no hospice care. It was my mom’s choice not to go into a nursing home. I was given the biggest education of my life. I cared for her alone for 3 weeks straight, an hr sleep here and there because Dad was in the process of packing up and moving into an apartment close by us. This disease is one of the cruelest, unforgiving diseases any human being has to live thru. No one, and I mean no one should have to die this way! So, if people are going to get involved by dumping buckets of water over their heads, I thank them….and then I ask the ones I know who are doing the challenge to take a few minutes out of their time to research ALS on the computer, just so they know why they are doing this challenge. This challenge has brought in more $$$$ for ALS research than ever before. I am thankful and I know my mom would be as well!!! My heart goes out to you and your family. I am sending many prayers your way. Thank you again ~ Joline

August 17, 2014 - 9:09 am

Jill - Thank you for writing this articulate and inspiring post. I will share so people truly understand about the challenge of the “bucket” and the disease.

August 17, 2014 - 10:24 am

bo - Mike – I hear you with regard to funding research, but I’ll also say that my family IS some of that “overhead.” The ALS Association advocate who works in our area provides equipment loans (my husband uses a power wheelchair they provided that we never could have afforded on our own and our insurance has a $5,000 cap on durable medical equipment – which was quickly gobbled up with the three machines required to keep him breathing without choking at night), solutions to problems we have never faced, serves as a middleman between us and doctors, medical supply companies and helps us find our way through an endless tangle of insurance issues related to a disease that costs $250,000 to endure. They are available to us 24/7 and free of charge. There simply is NO other resource for ALS patients and many of them do not have families who can stand with them and speak for them when their voice is gone. Research is HUGE, yes, but patient care is essential as well and the ALS Association does both of those things really well.

August 17, 2014 - 11:30 am

Kim Hutchison - Thank you for this perspective…

@Michael Felde: I admire your courage for sharing and hope you find peace…

August 17, 2014 - 11:45 am

bo - Michael – wow. I cannot imagine how difficult this road has been for your family. It’s because of stories like yours that we need to be relentless until we find a cure. Bless you.

August 17, 2014 - 1:32 pm

Dan Smith - I think the best part of the ice bucket challenge is that the whole idea is that you have 24 hours to complete the chalenge or donate $100 to th ALS fund. That being said, most people aren’t doing the challenge to get out of paying, they’re doing it and donating money too. Not to mention they’re challenging others to do the challenge and those people are doing the same. I myself haven’t been challenged yet but I know it’s coming, and I will be glad to dump a bucket of ice water over my head and make a donation. Good luck and God bless anyone who is dealing with this diease whether personally or a friend /family member.

August 17, 2014 - 1:42 pm

Alce - The message is powerful and ever so true. I don’t have ALS. I do have another form of MD and live some of the challenges that are mentioned in the article. My form also took my hearing entirely and is taking my sight as well. We do need these types of awareness tools even though they are short lived. When people look down on you because you have a car parkrd in a handicapped spot, because you are riding in a power chair, because there is captioning on the movie screen or the TV – they need to spend 24 hours experiencing just what it is like. We didn’t ask for these disability issues. We live them every hour of every day. We don’t feel well and we don’t get better. We need awareness and financial assistance to find cures. This is what would really help us.

August 17, 2014 - 1:56 pm

Cherre Holley - As a nurse I cared for 3 ALS patients until their deaths. I will tell you, this is one horrible disease. To lose function of all muscles, and just be able to sit and look, being at the mercy of others trying to anticipate your wants and needsall while your mind is intact would be hell here on earth. Communication devices were unheard of when I cared for them and a man and wife had come up with a primitive way to communicate, but it worked! He became so anxious as time passed because of his immobility, inability to call his wife whwn she ran errands

August 17, 2014 - 2:05 pm

Deborah Gary - Reading this brought back what my husband went through with his ALS. He lost his battle in 2010, a courageous and wonderful man. God Bless you both!!!

August 17, 2014 - 2:35 pm

Mrs hicks - Thank you for sharing,

A struggle can be hard. People judge to soon. Know you are not alone. We will all carry you. As we all need to walk the road. I tried the things you said. And it is hard. People react on you so different.

People should look in mirror. Then look back remember people who sit in a chair. They are still human. They fight more battles then you and I . ALS IS A TERRIBLE disease.

Let it go… And I mean let the ice buckets gooo. That cold shiver is something they feel. Day in and day out. And they can’t explain it to us….

Let’s fight

August 17, 2014 - 2:37 pm

Nancy - Thanks for writing this. My dad died of ALS in 2006 and it is terrific to see so much attention finally being drawn to this terrible disease. So many people still don’t know what it is (even with this challenge – some people thing ALS is short for alzheimers). I’m thrilled with the amount of attention it is getting and the amount of money being raised and I hope a cure is found in time to help your husband and all the other suffering out there.

August 17, 2014 - 2:50 pm

Marci - My 11 year old son has a rare neuromuscular disease…to explain it to people we say it is like the child’s form of ALS. I love this and am going to use some to get others to try to understand what he goes thru. My thoughts are with you.

August 17, 2014 - 3:32 pm

Carrie - Um…I did the ice bucket challenge and donated. I can guarantee you I wouldn’t have thought to donate anything if it wasn’t for being nominated. And for the record,I HATE seeing myself on video. I did it because it’s a good cause and maybe a little because I didn’t want to seem like a jerk and ignore an invitation to donate. What does it matter what you do to spread awareness. Who cares if its narcissitic. Who cares if not everyone donates. If you get a few extra donations out of it, it’s better than nothing. Why should anyone complain about an effort to help a good cause.

August 17, 2014 - 3:53 pm

Penne - Bo, My daughter fought ALS for 8 years, and always with a smile on her face. I thank God every night for taking her while she could still eat, speak and breathe without machines or tubes. Almost every time she asked for a drink of water she would apologize, as if it were her fault she couldn’t get her own water. She was only 50, and this is the most horrible disease on earth. At the end there is no dignity left, and it is so horrible to watch the one you love the most on earth go through it. As a Mother, this was the one time in her life I could not “kiss it and make it well.” So if people are tired of watching others pour ice water over themselves my advice is DON’T WATCH.

August 17, 2014 - 3:53 pm

Victor Rodriguez - Thank you for such an eloquent read! the examples you listed were spot on! Initially I believed the ice bucket challenge was a way for the public to feed their narcissistic tendencies. However, when I saw the PETE CRATES piece on sports center my opinion was changed. The amount of awareness and finances the challenge has raised is amazing! My mother passed away from this dreaded disease in 2003. She always spoke of stem cell research and the possibility of a cure. A cure I hope reaches your husband in time. My heart goes out to you and countless others that are stricken with this disease and of course their families.

August 17, 2014 - 3:59 pm

Anna Valkass - Hi,
My husband died of ALS in 2001 age 64. He had undiagnosable symptoms 8 of the 10 years prior to his death. I retired to be his only caregiver. The last year he was immobile and unable to communicate. He worked at Boeing, was an active Sierra Club Hike Leader and outdoors man. We were told it was a benign condition at first with muscle twitching then lose of coordination, muscle fatigue and you probably know the rest as the disease takes hold. No doctor would tell us it was ALS accept toward the end, a neurologist but I knew before. I agree more awareness is necessary for funding research. My donations go to http://www.alsa.org/research. I wish the ice challenge would include a dollar amount and a clearer message of what it is about. Otherwise I only see a limited value. I hope I am proven wrong. I pray for all families that face this dreaded disease.
Best Regards, Anna

August 17, 2014 - 4:09 pm

Joshua - I have to agree with what Shawna said. Most people will never know much about it other than the name “Lou Gehrig’s disease” and that includes doctors!

I should know because I have neurofibromatosis (NF), which causes tumors to grow on the nerve sheath (as well as brain tumors, hearing loss, and other problems). I often look at awareness issues when I have experiences like seeing doctors who’ve barely even heard of it despite the fact that it has a frequency of 1 in 3000 people! Like ALS, NF had a “common name” due to a person; in this case, Joseph Merrick (the “Elephant Man”), but the general view now is that he had Proteus syndrome instead.

The root of my concern is that it’ll get cast aside as a passing fad, robbing it of a chance at continued concern and interest, which is what all “rare diseases” deserve!

August 17, 2014 - 4:23 pm

Sharon Rau - My father was diagnosed at the age of 64-65 wih ALS, it is a horrible disease that takes your body and leaves the mind to know everything that is going on. It is a 2-6 year killer…he dies at 66 1/2. I watched him go from a very active business man to someone I could pick up, and I am 5’1″, 90 lbs. He weighed about that when he died..He never lost hope or the willingness to try to do things on his own, but in a shirt time he was dependent on someone for “everything”. There isn’t much out there about ALS, no cures,nothing to slow it down…just a slow death sentence. I am one who doesn’t give to organizations because most of the money goes to corporate…as far as I am concerned…but I think the awareness is priceless. Most people do not know much about this horrible disease. There is some research going on with service people and ALS…there might be a link…but I think we are a long way from knowing what triggers it. So, if you do not believe in the “hype”, ignore it and move on…for those of you who are sharing knowledge, thank you. Only when it hits your family will you understand…

August 17, 2014 - 4:23 pm

Pat Steinberg - My family has lost 7 members to ALS. My dad, 4 sisters and 2 nephews. Anyone that wants to complain because this awful disease is finally getting some much needed publicity and funding can come and trade lives with me. Nobody ever said you need to be compassionate or human. We the people know what this disease is are greatfull to each and everyone of the celebrities and everyday people that are trying to help. The rest of you need to pray that you never have first hand experience with this always terminal disease.

August 17, 2014 - 4:47 pm

Michaela Burbic - I must be honest. I had no clue what ALS was until this ice bucket challenge. There are so many people who know what ALS is now…i can just imagine how much more research will be done now. This challenge is the beginning of scientists finding out the cure for ALS AND I THINK IT IS AMAZING!!

Thank you for sharing this article and I will keep your husband in my prayers

August 17, 2014 - 5:07 pm

AnnaMarie - I love this so much! I posted it on FB- thank you.

August 17, 2014 - 5:16 pm

irene heath - Many of my friends have taken this challenge, and believe me its not taken lightly. All have did it and donated a lot of money to als. I knew a lady in my fathers church and it was heartbreaking to see her with this. God bless you and your husband, my prayers are with you and your family’

August 17, 2014 - 5:28 pm

CariM228 - You are exactly right. My mother’s BFF of 60 years passed after a very long struggle with ALS, and I appreciate you sharing what happens to someone who lives with ALS. Even watching her for years, I really wasn’t sure what was happening, and sometimes so afraid to ask because I didn’t want to seem nosy or macabre.

I’m glad that the challenge is bringing some much-needed attention to those who deal with the disease every moment of their day. Perhaps because of it – and the fundraising that is happening – families like yours will be helped in the here and now, AND money can be devoted to research for the future.

Bless you and all those who fight the battle. Keep fighting!

August 17, 2014 - 8:05 pm

Brooke - Thank you for this post. I haven’t seen too much about what the detractors are saying, but I know that all the people who are doing the challenge are doing it for heart-felt reasons. My clos friend Sarah has ALS (2+ years in). I’ve shown up for the walk; I’ve donated money. As someone witnessing someone you love go through this you are nothing but helpless, and sometimes hopeless. I think the challenge just made me feel like I had some agency. And even though I’ve donated $100 every so often over the past couple years, because of the challenge I stretched and gave $300. People who don’t know Sarah told me they were donating to her team, speed4sarah. It’s been incredible. We’ve had this same experience of people just having no clue what ALS is. Heck, I had no clue before Sarah got it. She’s only 35, and she’s been profiling other young faces of ALS on her site and on her FB page speed4sarah. The youngest woman last week is just 26. It’s so so so upsetting, and the challenge has been this little light-hearted thing amongst so much challenge. So this resonates for me and again, thank you.

August 18, 2014 - 8:26 am

Lynnette - I love that the challenge is bringing awareness and funding, my only issue is that now instead of donating money to the foundation, I’ve seen several people say that the people who they challenge owe THEM the money (upwards of hundreds of dollars). This has outraged me more than my news feed cluttered with the videos. Half of them have no idea what they are supposedly supporting. It is extremely upsetting to see people use a fundraiser for personal monetary gain.

August 18, 2014 - 8:31 am

Hannah Hetzel - What an amazing article! After losing my father when I was 15 years old and he was a young 38 years old, I agree that ALS needs as much attention and awareness as it can get. I get very frustrated when I also see the negative comments that people were posting As they have not lived this disease. My father passed away 13 years ago and I am currently working as a nurse practitioner. I see this disease not often but when I do I have such empathy for the families as I know what they are living. I don’t think the general population has any idea that horrific reality of being entrapped in your body with still having mental capacity. When it comes close to your heart you have to fight for what you believe in! Keep fighting!

August 18, 2014 - 8:32 am

Nancy - Well stated. I did the ice-bucket challenge because my best friend has ALS AND I donated the money. I could have just donated the money but I wanted to raise awareness. You can do both.

August 18, 2014 - 8:50 am

Karess - Wow I’m glad I took the time to read this. Thank you for sharing, I wish your family nothing but love and happiness through the challenges you face every day. XOXO

August 18, 2014 - 9:02 am

Vashti Ross - I love this piece. Love love love it.

I was diagnosed on April 1st, and I’ve been asked a LOT lately how I feel about this. And (in a much less gentle blog post) I answered pretty much exactly this. It is AMAZING. I don’t care if it’s a flash in the pan ego-fest, it is WORKING. I look forward to the day I am answered in completely understanding when I tell someone I have ALS. It’s not a cure, but for now, I’ll take simple understanding.

August 18, 2014 - 9:20 am

Step - I been watching critics and participants all over facebook rant over the ice bucket challenge. You summed it up so perfectly. People don’t know what this disease is and what it does to people.

Thank you for trying to spell it out to those who don’t know. We need people to become aware of ALS and get some spending, research and find a cure for this horrible disease.

My stepfather is suffering from ALS and I did the ice bucket challenge to make people aware of what ALS is.

Bless you!

August 18, 2014 - 9:28 am

Arlene Dees - Bo,

Thank you so much for so articulately describing what an ALS victim experiences through the eyes of a loved one.

My late husband died March 13, 2003 after suffering with all you have described— plus vision complications (diplopia) and repeated falls. During the latter, his arms and hands could never permit him to break those falls.

Symptoms were prevalent but all were erroneously diagnosed for years. Doctors
accused him of such things as: having “ADHD” and not concentrating on what he was doing, having “acid reflux” because of difficulty swallowing, being a “typical in-
denial” heart patient, and being a “closet alcoholic” because of his many falls and
slurred speech. His 55 pound weight loss was not even commented on. It took years and a team of doctors at Emory University Hospital in Atlanta to get it right: death was imminent.
Henry (Hank) Kline, a former football scholarship recipient and power swimmer,
courageously and silently fought the losing battle to ALS after endless days of suffering, It angered me during my mourning period after his death that he had not been referred to Emory immediately. However, time has made me see the delay in a different light. Since there was no hope, incorrect diagnoses spared us years of daily anguish…… fearfully watching the hands on the clock tick by, minute by minute, wondering if that day would be the last. Most victims know but can only hope for
survival.

With your help, along with other supporters providing awareness and the financial aid for research so desperately needed, ALS can be wiped out.

To those reading this blog:
Please keep passing on those roses and dumping ice water buckets as you fill up jars with research dollars. God bless you all.

Arlene Dees

August 18, 2014 - 9:37 am

Anastasia - Beautifully put. Thank you for sharing. I lost my aunt to ALS and it is refreshing to see people become more aware of this monster, either way they do it-it is better than being silent.

I hope you are finding peace and comfort in having to spend special moments with your husband.

All the best,
Anastasia

August 18, 2014 - 9:48 am

Jennifer - I am so sorry to hear that your husband is suffering so with this disease.
I wanted to pass on a bit of information, only in the hopes that it might help someone. I have been treating Lyme disease for four years and it can, for many people, mimic lots of other diseases. ALS is one of them. This is what I wanted to share. A study done at Harvard. They had 100 cadavor brains of people that had passed away from Alzheimer’s , ALS, Parkinson’s and one more I can’t recall right now. 75%of the brains tested positive for spirochetes in the brain ( those are the spiral shaped bugars responsible for Lyme )
I know that not every ailment out there is related to Lyme but it’s worth knowing about incase it can help you or a loved one. There’s videos on you tube of people who were diagnosed with ALS and treated for Lyme and started getting better.
Not everyone , of course, but I have seen it as I’ve researched my own situation.
I hope I’ve shared this info in a way that is helpful and easy to understand. Any illness that is invisible and misunderstood is very hard to deal with. My prayers go out to all those suffering.

August 18, 2014 - 10:18 am

Kim - Hi there,

Awesome piece of writing you did there, it really helped me understand this horrible disease a little better.
Here in the Netherlands, most people know ALS and know that it’s deadly and that there is no cure.
The reason so many people are aware of that is because there has been advertorials at busstops and next to the highways and stuff. These were really big posters with a face of someone with ALS, the message beneath the picture: I died of ALS, please continue my fight…

These were also shown on television, short clips of people with als, and afterwards the date they died (if they allready did).
Quit confronting, but really effective.

Best wishes, and a lot of strength to you all!
kim

August 18, 2014 - 10:22 am

Linda Barnwell - I have enjoyed watching everyone take the challenge . To know these people are enjoying raising money and having fun at the same time. And their reactions are priceless!!!

August 18, 2014 - 10:25 am

The ALS Ice Bucket Challenge - […] piece here addresses the frankly baffling backlash quite […]

August 18, 2014 - 10:30 am

Janet Carrigan - Bravo, Bo! My son, Wade Simoneaux, was diagnosed with ALS at only 20 years old and lived with all the challenges you wrote about, and then-some, for almost 16 year. To all the nay-sayers, would you be saying the same about the Komen Race, the MS 150 in Texas or any other “fun event” because I can assure you that there are no fun events to look forward to when a family is struggling with ALS. Shout it to the world, I say, and bring the awareness to every household – because someday it could be you who is facing the tragic truth: this link is a video Wade made — http://www.batterupforals.org/gallery/it-could-be-you.html

Rock on, and ice, ice baby!

August 18, 2014 - 10:40 am

Angie Weinel - I’m sad to say I knew about ALS but didn’t know exactly what the disease was till my friends wife died from it! He was a loyal,loving husband that cared for her till her last days! It saddened me to see the grief that he is still going through! Until I read your story of just some of the problems you go through with this disease,I never really knew what my friend went through,let alone his wife who had to go through this horrible disease! May she forever rest in peace! She was a sweet,kind caring person and the best cook I ever knew! Paula Deen would of been PROUD!!

August 18, 2014 - 10:44 am

dawn n. - Love the article from a person who has walked the walk with ALS. As a daughter of a person with ALS who passed away 2 wks before my child was born I still feel the affect 20 yrs later. Unless you have walked this walk you have no clue. God Bless everyone who has participated either in the ice bucket challenge or educating others, we greatly appreciate it. And for those of you with negative comments I pray a cure is found so that you or your loved one don’t have to feel the devastation we have.

August 18, 2014 - 10:46 am

Jessica - I think this is the first real information I got about this. I like the Ice bucket challenge but I do have to say some people are changing how it works. I know am about to start yelling at my friends for ruining a good way to fundraise money and make people aware. Many people are now using the ice bucket as a get out of donating towards the cause. I know many people who dont even reference it back to why they are doing it. This makes me angry to see people ruining such a great cause. I understand people not having the funds to donate but if anything should state clearly why they are doing this challenge I have even had friends who are doing just so they dont have to donate which is wrong. I love your post and it has really made me more aware. I am so sorry for you and everyone having to deal with this. I can relate in ways dealing with watching someone struggle with a disease and there be nothing or little you can do and I am hoping some relief can be found. Keep getting the word out.

August 18, 2014 - 10:48 am

Amy - Thank you for your courage to deal with this life altering disease everyday.

We did the ice bucket challenge to show my kids we don’t live in a bubble. We live in the real world, which has extremely harsh realities every day. To show them, others are not as fortunate as us. People from every walk of life can become overwhelmed with this disease, every minute, hour, day, week and year. Sure we put it on Facebook and tagged some others so that they can spread the word to their friends and family. For us we raised money for a cause we wouldn’t have donated to otherwise.

I hope that we we did helped ease your pain just a small amount. Thank you again for the courage you have everyday to fight this.

Blessings and prayers to you and yours. Everyday, all day.

August 18, 2014 - 10:57 am

Shell - I love the ice bucket challenge
1. It has brought so much awareness to ALS!!
2. It’s got people’s attention in a way that makes people actually want to join in… You yourself are doing something a “little” uncomfortable. And also kind of “fun”. By dumping ice cold water on yourself. Maybe in some way that makes us feel like we’re symbolizing doing something for all these brave folks with this disease. I love that you can call out your friends!
3. Love that you actually choose others to DONATE!!! What an incredible way to spread awareness! People are having fun with this!!
Who cares if people are cranky about seeing these videos!! They obviously aren’t personally touched by someone in their lives by this horrendous, disease!
I say keep it going!!! This is so wonderful that so much awareness and funding is being raised!!!! Praise God!!!!
We love you Bo and Steve and your whole wonderful Stern crew!! We pray for you regularly. May you feel Gods Holy Spirit surrounding you and lifting you up in those moments of need. <3.
Shell

August 18, 2014 - 11:02 am

Kirsten Orechiwsky - So heartfelt, honest and real. Thank you for this post. I wish you and your husband and family the very best, and I hope that one day soon, ALS gets the research and answers it deserves.

August 18, 2014 - 11:08 am

Nicole - Thank thank THANK YOU for writing this. It explains the inner battle I’ve been facing during the success of this challenge. My father was killed by this terrible disease in 2007, and although I know first hand how desperately the association needs this money, I also want people to really LEARN what it is they’re doing this for. What ALS actually is! I was amazed at how many people I know where doing this challenge and never put it together that it was same disease my father had. And these are people who actually know me.
I’m fully in support of anything that brings money to helping the families and patients. And I’m just really comforted to read this and know I’m not alone. Thanks so much for sharing.

August 18, 2014 - 11:18 am

Jessica jones - Thank you so much for this article!! I watched my dad take his last breathe because of ALS 6 months ago. Watching the ice bucket challenge has brought tears to my eyes. I finally posted today on FB to delete me before you post anything negative about this challenge. If people donated without being asked then we wouldn’t need fundraisers. This has been a powerful example of how good the world can be when asked to help!

My thoughts and prayers go out to you, your family, and especially your husband as you battle ALS.

Love,
Jessica jones

August 18, 2014 - 11:21 am

Marianne - Thank you for sharing your families struggle w/all of us! My little cousin was just diagnosed w/Leukemia, which I know isn’t the same kind of cancer, however he’s only 4 & it was a complete shock to our family. anyone dealing w/the responsibility of caring for a loved one can empathize w/what you’re going through! I appreciate the list of how we can in a very small way “enter the world” of those fighting w/ALS! i’m thankful for the willingness of everyone to be involved in the ice bucket challenge & encourage people to not only do the challenge but to give even a small donation to the cause!!! I think we all could afford to go a week w/out our special coffees, lunches out etc & donate to a cause close to our hearts!!! praying for you & your family!! God bless you abundantly!

August 18, 2014 - 11:22 am

carrie - well said. It looks goofy but who cares. This has gone viral and I hope this great burst of goofiness and money raised gets us even a tiny bit closer to a cure…

August 18, 2014 - 11:27 am

Sue - Bo; Thank you for the very honest, heartfelt explanation and examples of walking one mile in ALS shoes. I love the ice bucket challenge and the awareness it is making. The more people complain the more the next person is going to be able to explain what it is for. Publicity whether good or bad increases awareness…. It is true that we have walks for cancer; bike for the bay for MS; etc. and they are all very deserving causes (I am a caregiver for an MS patient) many of the things you described with ALS we are dealing with also. Unfortunately; we were diagnosed about 30 years ago before all the wonderful research and amazing medicine was available and is now too late for our loved one. We are so happy the research that has been done through the years has helped another in our family diagnosed about 15 years later to continue to work, have a family and function with much less problems. With so many other people being diagnosed with MS today hardly showing any signs at all. Bo – I did not go off on my own journey without reason. I wish for you and everyone who lives with ALS themselves or through a family member that THE ICE BUCKET CHALLENGES is only the beginning to raise awareness and money so that one day (soon) people stricken with ALS will also have the opportunity to continue to live the life they had before they were diagnosed. I too will be taking the ICE BUCKET CHALLENGE THIS EVENING and I am happy to do so for a very deserving fight! God Bless you and your family.

August 18, 2014 - 11:40 am

Janet Orant - I say “Thank-you” My best friend Diane Paul died of this horrible disease her sister Kathy Monzo died a few years earlier. I did the Challenge for them. My Grandsons and their friends are asking the question “What is ALS” ? It has raised awareness and money, so why is it bad ? Jerry Lewis did a Telethon every labor Day weekend. Did anyone question his motives? I applaud this and everyone who takes the Challenge.

August 18, 2014 - 11:45 am

Kathryn - Thank you so much for writing this.

August 18, 2014 - 11:48 am

Alice Loy - Thank you for these comments – our family watched our beloved son-in-law cope with ALS, and during that time, observed how little was said or done for the devastating disease. This year’s Ice Bucket Challenge has done more for awareness than ever before, and is proved by the millions of dollars donated. Let’s promote research to defeat ALS!

August 18, 2014 - 11:48 am

Sisterhood of the Sensible Moms - Wonderfully said and I am sorry ALS is a part of your life.
My favorite part about the ice bucket challenge? Raises awareness and money with absolutely no overhead or administrative fees.

Ellen

August 18, 2014 - 11:49 am

Diane Schadle - My sister at age 64 has been living with ALS for 2 years. It has been advancing slowly but she already has a feeding tube , is difficult to understand when speaking over the phone, has a hard time with stairs and curbs ,can’t wash her hair because her arms won’t reach that high. She has trouble showering, dressing, using spray cans, opening car doors.She can’t lift herself off the floor if she falls. She has suffered several bouts of life threatening pneumonia before getting feeding tube. She prays God takes before long. She is so brave. With her husband(caregiver)’s help , they are at Disney now taking their 9year old granddaughter for the 1st time while my sister knows it can be her last time.
I thank everyone who accepts the bucket challenge and draws attention to this little known disease.

August 18, 2014 - 11:50 am

Jane Hess - My father died from this horrible paralyzing disease. I watched and cared for my favorite human alive… suffering the indignity… being swallowed by the frozen cocoon his body was becoming… soon the muscles had seemed to dry up and all that was left were his pleading EYES. Help me, Help me I will see that till my last breath. If there is anything to make awareness move forward, to make it real to people, then the Ice Bucket challenge is working and kudos to the people who are involved.

August 18, 2014 - 12:00 pm

Josh - Great article. I was completely unfamiliar with ALS although I came to the same conclusion of the ice bucket marketing scheme was genius and i don’t care how fake or phony you may think the intentions of those posting are if it helps raise funds for such a great cause I’m all for it and please flood my “social engine” as much as it will help. Thank you for your perspective and your dedication, thoughts and prayers are with you and your family.

August 18, 2014 - 12:01 pm

Norma Lewis - I as a wife of a AlS who has been gone over 30 years and there are still the scares of him fighting for a day today life in which he knew what the ending would be.His children watching him become weaker,and specially a son of 9 years old not understanding and watching him as a child trying to help feed his father, or give him a drink of water,my biggest fear isthat they might have for my son and his children might have inherited the gene. Praying to God that this never happens.Thankful for my son turning out to be the man that he is and the careing father.I really don,t want to go into the horried details it is just just enough for anyone that have to live with a person with this illiness. Thanking God for his strength.

August 18, 2014 - 12:04 pm

John Walls - My friend passed away from this disease two weeks ago. He only let one person know about what was going on because he didnt want to burden anyone. If I had the chance to tell him, he was my friend, and as a friend he could never be a burden and I would have loved to spend the past few weeks with him. He could hardly talk because of ALS. He had a hard time eating. It was difficult for him to hold his head up. My 3 yr old and 10 yr old took the ice challenge in his memory and they challenged me to do it. When I was told what he had I had to look it up and realized it was Lou Gehrig’s disease. I am glad that my children and grandchildren are aware of it now. R.I.P. Mark Harrison you were a great guy and I will always have the memories of you. To anyone suffering my prayers go out to you. Make sure you tell your closest friends. It is bad to make one person responsible to hold the secret and your friends need to help you. It seems like he passed away alone and that is the hardest thing to take knowing that maybe I could have made him laugh for a minute and forget what he is dealing with.

August 18, 2014 - 12:18 pm

Megan Teeters - What a great article. I was crying earlier today about how cruel people are being over this challenge. In reality they waste more water when they flush after their morning poo, or take a shower everyday. This is a fight for life. I remember when i was doing the walks in 2004 after my father passed, how little money i had raised. Even though so many knew me, my father and my family….it just never seemed to click how badly funding was needed. Maybe he would have lived longer (2 1/2 years after diagnoses),maybe i could have made him more comfortable while i care for him ( we couldnt afford care nurses), maybe it would have helped me to deal with his horrific passing. So thank you for writing this, it gives me comfort knowing we are not alone in this.

August 18, 2014 - 12:19 pm

Sydney - I see that comments need approval. Please delete my last one. I skimmed this and passed judgment. I’m glad that you said what you did. I love the ice bucket challenge.

August 18, 2014 - 12:27 pm

Sarah - Thank you so much for sharing this. Beautifully written. My mother in law died just a little over a year ago from ALS.

August 18, 2014 - 12:29 pm

Melanie - My dad had ALS for six years before it finally took him away. To watch someone go through it was terrifying, so one can only imagine how horrible it must have been for the one going through it. We watched as my incredible dad battled the disease for two years longer than doctors said he would. The thing that was the most appalling was the lack of knowledge anyone had on this disease. We had to go to a doctor 5 hours away just to get proper medical care for him, which is an incredibly difficult trek for anybody let alone my dad. These videos have raised awareness for this awful, terminal disease. Anything that brings attention to this disease will help the cause. So whether people are dumping ice on there heads or performing some other stunt, as long as one extra person who would be otherwise ignorant learns about this disease it will ultimately lead to more awareness and donations in order to fund a cure that will hopefully come about someday, and that I will be here to see it.

August 18, 2014 - 12:34 pm

amber j - This is a beautifully written post, couldn’t have said it better myself! Though my family has not been touched by ALS I have friends who have and know very much what it is. But it’s another illness out there that people are so completely unaware of. Or if they have heard of it they just don’t know anything about it.

Sometimes more than fundraising, AWARENESS can really do some good! Bring things to light, and the more people aware… the more the medical community takes notice and can do more research, funding, helping families and more. Bravo!

August 18, 2014 - 12:36 pm

Raq - Thank you for writing this. My mother died when I was 15 after a 6-year struggle with ALS. I’ve been trying to figure out how to respond to the ice bucket challenge since it started – it IS a stunt, and the kind of thing I usually hate, but finally people are talking about ALS and helping to fund research and treatment.

August 18, 2014 - 12:40 pm

Sue - Keep the challenge going and the funds coming in imtil the research is complete and ther’s a cute for this horrible disease.

August 18, 2014 - 12:51 pm

Amy - My husband passed away 2 weeks ago today from ALS. The ice bucket videos are all that can make me smile right now. Thank you for this!

August 18, 2014 - 12:55 pm

Jamie - My dad died from ALS about a little over a year ago. I watched this super fit guy who jogged 5 miles up a mountain every day slowly deteriorate, losing the most basic gifts we take for granted. His was the less common variety that begins with speech/swallowing; he died (lungs gave out and filled) before he reached the point of not being able to walk but the indignities he suffered were horrible. Even things like walking around with a washcloth in his mouth because he couldn’t swallow his own saliva. He hated going out in public because he felt like everyone thought he was a monster. All that to say, if people dousing themselves with buckets of ice continues to raise awareness and the funds for research, then I’m all for it.

August 18, 2014 - 12:58 pm

Linda Lee Smith - The challenge is bringing family, friends, strangers together. Loving their faces when they offer the challenge. Some have tears because they know someone with ALS. Love the strength it takes to dump the bucket.

If this last for years it way outbeats the hate, the violence seen way too much.

Smile and mean it when you see suffering. Praises to our God!

August 18, 2014 - 1:01 pm

Cera - I just lost my grandmother to ALS in May. It still cuts me to even think about it because she was my everything. She was diagnosed on May 1st the previous year. We had no idea what ALS was. To watch her struggle was heartbreaking. She never complained except when we tried to help her. She didn’t want to be a burden. This challenge has raised 10x the amount of money they did last year so I think it’s wonderful.
Thank you for writing this. My prayers are with your husband and your family.

August 18, 2014 - 1:05 pm

Tammy Brusch - I agree that this needs to be recognized…Let’s keep it going. Raise awareness! My grandmother was diagnosed with this very grim disease. They gave her 2-5 years to live. When I say live it really isn’t any way to stay alive! It started with a little limp and then her speach started to slur. We thought maybe she had a mild stroke. I went to the doctors office with my grandfather and uncle that day and when they walked out I held my grandmother’s hand while she wept. We knew we had a rough road ahead of us. Well, I helped care for her in her last years. She kept trying until she was fed with a feeding tube, couldn’t walk, talk, etc. She sat in the wheelchair grunting to get our attention when needed. Maybe because she had an itch or she wanted her hair combed etc. She passed away on my 30th birthday. She went to bed and I had gone in to say goodnight. I held her hand, told her I loved her, and said goodnight. No human should have to be imprisoned in their own bodies. It was so tough to watch her hurt this way. let’s find a cure! Let’s make life easier on those diagnosed with ALS! I miss her everyday and can’t help but think her life was cut too short. I love you grandma, I know you are sitting in heaven with our heavenly father in good health and happy now.

August 18, 2014 - 1:14 pm

Crystal - I love this! I too have watched a family member battle this disease and it is horrible to watch! Not only do I donate to ALS out of every pay I will also be taking the challenge and donating on top of that! That’s right get the word out dump that bucket of ice water over your head and start nominating people!!!!!!!

August 18, 2014 - 1:15 pm

patricia pagel - God Bless you. So wellwritten. People have no idea what this disease entails. My dad passed awa 5 yrs ago from ALS.

August 18, 2014 - 1:19 pm

Tammie Anderson - Well I am a member of an ALS family and I am glad that they have the Ice Bucket Challenge! It is bringing awareness to how horrible the disease really is. My husband died of ALS in 1996 and at that time no one knew much about it. They knew what it was called but then they would always ask what is ALS. We only had others at our clinic to lean on and in regards to caring for an ALS patient it was like the blind leading the blind. We learn from on another.As many sad memories the ice bucket challenge is bringing up, I’m happy that people now know how horrible it really is. My husband’s doctor always said this disease hits the nicest people. My husband never complained we just asked to get though it.Keep the ice bucket challenge going we need all the help we can get. And God Bless Dr. Stanley Appel in Houston. He keeps fighting the fight and has never had a patient that has lived.

August 18, 2014 - 1:23 pm

Kim Gore - Great article. I agree what ever it takes to raise money for research do it.I have sadly lost my father and sister to this horrible disease . I pray someday for a cure.

August 18, 2014 - 1:29 pm

paula dahl - My husband has ALS. And we watch every ice bucket challenge. He cry at everyone. Because it shows people care. thanks to everyone who has done it or donated. paula

August 18, 2014 - 1:31 pm

Robin O'Neal - God Bless you!! I watched/helped my brother battle this disease for 2 years before loosing his life in Dec. 2012. Your description of what it is like is awesome. His wife, children and the rest of my family devoted all of our time to making his life the best it could be and taking him everywhere he wanted to go including travel softball games his girls were playing in.

I also understand what it is like to be with health care professionals that do not have a clue what ALS is or how to care for someone. When he was in the hospital, his wife or I had to stay with him 24/7 to make sure he was being taken care of because no one understands this disease.

I will pray for you and your family because I know what you are going through.

Again,
God Bless you for what you are going through and hopefully one day there will be a cure and no one else will have to endure this horrible disease!!

August 18, 2014 - 1:31 pm

Mary - Who cares what the whiners think! It’s an ingenious idea. 1,000 cheers for the idea and those who ” play the game”.

August 18, 2014 - 1:31 pm

Barb - I have mixed feelings about the notices. But if people want to get behind raising some money for research, let them do it. I know it is not 100% perfect, but it is a lot better than most of the post we see on FB.

August 18, 2014 - 1:33 pm

Ellen stiller jarrett - Our family suffered watching our dear mother/grandmother die in 1997. No one can know until they personally watch a loved one wither away with their spirit and soul in there still alive. I applaud the current awareness and the bucket challenge. Just hope and wish it will not be a fad.

August 18, 2014 - 1:37 pm

karen polsky - Thank you for writing this.

August 18, 2014 - 1:44 pm

Courtney - You are an inspiration. Thank you for taking the time to explain to the world what the purpose of this challenge really is. My aunt died so young, from ALS, and I never got to say good-bye. I will always be devestated knowing the pain she was in.

August 18, 2014 - 1:48 pm

Gail DiMuro - I am so happy that you posted the Empathetic Experiences and that many are becoming more and more aware of this insidious disease. I hope and pray that one day there will be a cure. My brother passed away in less than one years time. On the one hand I am glad he didn’t suffer too long (it was very agressive, he had trach, feeding tube, was non-verbal 3 months after being diagnosed) BUT he was way too young (as many are) to pass from this disease. My prayers are there for all who suffer from ALS and their families.

August 18, 2014 - 1:54 pm

Joanie Charlesworth - I made sure that when I did the challenge I noted that I donated. That is what people need to do, not just pour a bucket over there head for the fun of it. That sickens me that some people are not taking this seriously!

August 18, 2014 - 1:55 pm

Amy - I have to say I was excited about the “ICE BUCKET CHALLENGE” at first. I agree that this is a great way to get ALS recognized. However, how many people do you think that do the challenge completely understand or take time to research the disease. That is the most irritating in my eyes. Until you have had a loved one suffer and die from this disease you don’t fully GRASP what individuals with ALS experience and what the family goes through as well. I do hope that those who are doing the “ICE BUCKET CHALLENGE” take time to donate to the cause as well. ALS still requires extensive research to understand the disease more thoroughly, develop a better treatment, or better yet find a cure.
I lost my father 3 1/2 years ago to this terrible disease. It is so odd how ALS affects every person differently. I was lucky that my father was able to speak up until the end of his life. The list of tasks mentioned in this article are right on target. The description of daily activities and how the individual feels having their children care for them blew me away. The author did a great job at describing the difficulty of simple daily tasks that those with ALS experience. It has to be so hard for a person with ALS to watch themselves slowly become paralyzed by this disease. Actually it is difficult for all those around the individual. To see my once strong dad bound to a motorized wheelchair, need help shaving, brushing his teeth, clipping his finger nails/toe nails, eating, bathing, and etc was extremely hard. I cannot express the feelings I felt during the course of the disease that took my father’s life.
Overall I am happy that ALS is getting more attention but I feel that these videos are not focusing on the aspects of the disease. It appears to be a way for individuals to draw attention onto themselves. Please remember the main purpose of the “ICE BUCKET CHALLENGE.” Take time to research the disease and to make a donation to support research.

August 18, 2014 - 1:55 pm

Dan - Thanks for posting this. My dad just recently passed from a very aggressive from of ALS that starts in the head affecting speech, neck muscles and swallowing. I’m glad to see this getting some much awareness and attention. Our prayers are with your husband and your family.

August 18, 2014 - 1:57 pm

Janet - I’m loving seeing my Facebbok friends of all ages helping to shed light on a worthy cause! What a clever, entertaining, and refreshing (no pun intended!) way to raise awareness and much needed funds!

August 18, 2014 - 2:02 pm

Tim - Very good blog.

my problem is how the challenge is often presented as donate money OR dump ice on your head. The ice dumping being a way to get out of donating. I’ve seen several mostly celebs, doing both..which is cool. But to just dump it on your head and post a video thinking you’ve done your part is silly.

August 18, 2014 - 2:05 pm

joan silaco - i was waiting to read the other side of the challenge. after all, there’s always a killjoy out there. i am disabled too, and i think its a wonderful, fun idea to get the point across. i’m on disability, but i know there are lots of celebrities out there in that its not a burden to donate money, and who wouldn’t want to douse some of those celebrities we love to hate? justin bieber anyone? but seriously, i had no idea that it was so low funded, yes there are other sicknesses vying for attention/dollars. stand up to cancer is another group i read about where the people donated the money, using their money, not so much of the gov’t to get the job done. i know its what other people said in these comments, its fun for everyone, gets a laugh, gets the donations, puts a smile on peoples faces, it gets us talking about something we maybe don’t want to talk about, it reminds me of the wave at sports stadiums, you think its silly, but you do it anyway. what’s so bad about that? maybe other countries will use the idea for their causes too. isn’t that what makes our country so great?

August 18, 2014 - 2:13 pm

Carol Hays - I wish this had been as viral 2 months ago so my husband would have known about this before ALS took him from me on June 17.It is a terrible disease.At the end he could only move his eyes.We could no longer communicate.We were working on that but he was gone before it was in place.
Thanks to everybody doing the ice bucket challenge.

August 18, 2014 - 2:15 pm

Karen - My husband had a dear friend pass away from this disease. you were very polite in your letter and right on target! Thank you for whoever started this to bringing more awareness to the public about how this affects families & friends. God Bless you and your family.

August 18, 2014 - 2:17 pm

Mary - along with the money , wouldn’t it be nice to spend the day with someone afflicted with ALS or any other neurodegenerative ( or any other terminal disease)
Money , if used appropriately may help the cause but how about relieving a family member for a few hours so that they can re-juvenate themselves if only for a short time.
People who can not speak do not exits to some people. In a wheelchair, so what ? people will stand in front of you in any setting just to be first!
People don’t usually” get it “unless they have lived it. It’s scary as hell.
As entertaining as the videos may be, ” getting it ” takes more than just ice cubes and water.
Please don’t get me wrong it’s a good start . I don’t wish any neuromuscular disease on anyone. Please take the time to share yourself with someone who is afflicted

August 18, 2014 - 2:32 pm

Jane - GodBless you! ALS sucks, so does cancer, so does ALZ!
Thank God for any and all attention we can bring to ALS! There are so many needs in our world and this is one of them! My bro-in-law went thru his fight w/ALS back in 2000. We didn’t have facebook & nobody said “hey let’s dump ice on our heads for awareness. Truly I would dump ice water on my head everyday if it was needed to help even just ONE ALS patient have a better day!
Ice bucket challenge belongs to ALS & at this time we finally have people taking notice! Raise A Ruckus for ALS!

August 18, 2014 - 2:33 pm

Judy - These six items are so true my husband deals with them daily

August 18, 2014 - 2:48 pm

Kathy Palmer - Vaccines can cause ALS. Wake up America to what the drug companies are injecting us with. If we get sick from a vaccine, then we need to have a lifetime of drugs.

August 18, 2014 - 2:53 pm

Ice, ice, baby! | A fine line. - […] For another take, check out Bo Stern’s post, What an ALS Family Thinks About the Ice Bucket Challenge.  […]

August 18, 2014 - 2:53 pm

Betty - I do know that my granddaughter just took the challenge and the church she attends is donating last nights offering along with next Sundays offering to ALS. We’ve experienced this horrible disease in the family and I think the more awareness the more donations. Please donate to this horrible disease!

August 18, 2014 - 3:00 pm

Heidi - My mom died from ALS 14 years ago. When I read your list, I started crying, remembering each and every one of those things happening with no hope of stopping it or curing it. Thank you for sharing your story. Let’s continue to raise a ruckus so that one day we can celebrate a cure.
Blessings and prayers

August 18, 2014 - 3:03 pm

Kari Marks - I saw a family friend do the ice challenge on FB and heard her challenge others…I really wasn’t sure what this new fad was but then saw it on the news. I was educated within 24 hours. I am VERY glad this is going on and being passed around on behalf of ALS!!! Donation on the way!

August 18, 2014 - 3:04 pm

Harriett - Thank you for this post! I’ve been so upset by the negative things I’ve seen about the challenge the past few days. ALS stole a very dear friend of mine a year ago…just 11 months after her diagnosis. I was privileged to help care for her the last 6 weeks of her life and the experience changed me forever. She was a very private person and to watch her endure the loss of dignity with ALS was almost as hard as seeing the physical effects. I never knew about the physical pain until then either. Unfortunately 2 days after she passed away another friend announced his diagnosis and is now in the battle of his life.

August 18, 2014 - 3:08 pm

Dr. Roland Tolliver - I just wish someone had come up with this idea or a similar one to raise much needed money for Autism Speaks or a similar charity for autism awareness. I was hesitant, but took the challenge when my name was “called out” by my son-in-law. I have had patients die from ALS and know full well the heartbreaking feeling of helplessness for those who have been afflicted. Yes, this went viral. Yes, people have the option to not take part. And yes, people are entitled to their opinions, but for those who wish to participate, I say, “Go for it”. As for the memes about wasting water…take one less shower and it will equal out. The same people posting these probably would have no qualms about jumping into a hot tub full of “wasted” water. No matter what good is done, there are always naysayers who will try to put a negative spin on something. Andrea Darlas interviewed the local ALS chairperson this morning and she stated that over $15 Million has been raised this year, which is up from around $1.5M last year. Something’s obviously working. Praying for your husband and for you. The caretakers are so often the unsung heroes in devastating diseases like ALS, Parkinson’s and Alzheimers. Blessings to you.

August 18, 2014 - 3:12 pm

Mamakanag - Agree, Bravo for whoever come up w/ a great marketing plan to raise money for this devastating, crippling disease. If you have ever known or seen someone go from a vibrant life to being diagnosed w/ ALS & the effects it has on the human body, mind & soul it is sad. Just as a friend helping out was hard enough, imagine the family. I have been unfortunate enough to have known 2 people that passed away from ALS. I think its great. Wished I had a ton of money to donate but I dont, but I do what I can as well as I do w/ some other charitys dear to my heart that also are severely under funded.

August 18, 2014 - 3:44 pm

adam - I truly understand how hard it must be to have ALS, or a loved one suffering from it. But here is the problem not a lot of ignorants seem to realize, all this fresh clean water is being wasted!!! We are so selfish that we cant do any good to just receive a simple thank you for it, we want attention, people only donate money so they can get a tax refund, that is dosgusting! Here is my challenge, donate to ALS whatever you want, and with no more than $5 extra dollars go buy a case of bottled water and hand out waters for an hour at your cities downtown! Remember healthy or suffering from ALS or any other disease, withouth WATER WE CANT LIVE!!!!!!

August 18, 2014 - 4:06 pm

Jill A - This is the first link on my Facebook to actually educate me on ALS. I wonder how many of those that have done the “ice bucket challenge” actually understand the magnitude of this disease. Thank you!!

August 18, 2014 - 4:19 pm

Stephen M Guiliani - Hi Bo. Thank You for writing this piece on ALS. I’m with you , RAISE THE ROOF !!! Sadly we just lost my dad in January to ALS and his mom in 1999 from the same. So Teresa B. – Who Cares ? I DO !!! To watch a family member who is strong and full of life just waist away in front of you and know there is nothing you can do about it is one of the hardest thing I have ever had to do in my life. Bo you keep up the good work and we will help spread the word on the Ice Bucket Challenge. 5 of my family have do it just today and we hope it doesn’t slow down for years or until there is a cure for this Beast !!! Semper Fi…..

August 18, 2014 - 4:22 pm

Tiffany - I think the ice bucket challenge is good BC even though some may nt donate it does bring awareness BC when Iffjust saw the challenge n heard what it was for I stop though to myself n said what is tht! I then looked it up! I think the challenge is good!!!

August 18, 2014 - 4:33 pm

Jon Larson - Bo, I’ve lost family members to cancer and diabetes but I’ve never heard of ALS (which I didn’t know was Lou Gherigs Disease) until the Ice Bucket Challenge. Now I’ve read up on it like I’m sure a lot of people have. I’ve been nominated for the challenge and am going to accept it and pass it on, but like many others, I would also like to make a donation for all the reasons you mentioned in your response to “mike”. For those of us that are unfamiliar with this foundation could you please help us out with where to funnel these funds? I would greatly appreciate your help!!

August 18, 2014 - 4:36 pm

Marcia J. Gasses - My mom spent her time battling ALS living with my family….always close it was so hard for my teenage children to watch helplessly. This disease as evil as it is taught my children that life is about more than themselves that we need to cherish every moment with family and tomorrow is not guaranteed. I was fortunate to experience my mom take her final breath as I held her hand peacefully at home…Thank you for your ability to place into words what I could never bring myself to say.

August 18, 2014 - 4:36 pm

Terri e - This is what I’ve been saying to those inconsiderate rude comments I have seen also! I will pass this along you are spot on. The only thing also is people don’t realize the toll it takes on the caregivers. My mom has had ALS for 18 years myself and family have taken care of her for 14 my youngest is now 15 so it has been pretty much his whole life and my daughter who is 17 which they have never really been able to experience what a grandma is my oldest is 23 he was able to see the good to the bad he has been amazing in helping us but now it is time for him to move on (getting married) ..so it falls back on myself and husband ( which is disabled) and I work..what I’m saying is I just wish there was more for the caregivers I have looked into everything and unless you have money it’s not much help .we have lost so much of ourselves but feel stuck! Thanks!

August 18, 2014 - 4:43 pm

Carol - Thank you so much for this post. I lost the love of my life to ALS 4 years ago and it seems like yesterday. We were married 41 years and was my soul mate. His grace and dignity during this terrible illness was amazing and blessed many lives. I LOVE the ice bucket challenge and hope it lasts a very long time and raises millions. I am hoping a cure will be found in my lifetime. I will continue to contribute and support the ALS fight! God bless you and your husband. Breath in every moment with him and when he’s ready to go–give him permission.

August 18, 2014 - 4:46 pm

Steve Schwalbendorf - I watched my brother 9 years younger than I choke, eat through a feeding tube, get help with EVERYTHING and finally choke to death. God Bless this Challenge and all those that have participated and gave for ALS research. Those of us in our family, mine and my sister-in-law’s and all of their friends and all the Navy people who knew my Command Master Chief brother are devastated by his passing and enduring this horrible disease, Give more than once, I do monthly. Hopefully some day there will be an answer and a cure.

August 18, 2014 - 4:48 pm

Adam Kucharski - A mile in ALS shoes is right on the point, my mother passed away in 2005 at the age of 51 from ALS, I was right by her side everyday taking care of her and would not take back any of it, she is greatly missed and my heart goes out to anyone that has been or is going though this now.

August 18, 2014 - 4:59 pm

Anela - When I first seen this ice challenge it was in hawaii and it was for cancer…. And no matter if u did the challenge or not u were suppose to donate money, $100 with no ice challenge and $10 or up with ice challenge… Then post the copy of the donation and the ice challenge or just the receipt of the donation… It was to raise awareness either way…. No one will ever know how someone with cancer or ALS feels and my heart goes out to all of u

August 18, 2014 - 5:00 pm

Deborah - Thank you so much for writing. ALS is a monster disease, and I just can’t understand why we haven’t made more progress. So many my brother has seen offer NO HOPE, and I’ve heard horror stories about others who are even cruel in how they speak of patients. We need people to understand what this is doing to people, to families. The disease needs more attention, and more money, to treat patients and help them, not just write them off. I’m heartened by the Ice Bucket Challenge. It doesn’t make sense, but neither does ALS.

August 18, 2014 - 5:02 pm

Jaime - Very moving and very eye opening. I have skipped over most of the ice bucket challenges on Facebook, meaning I haven’t complained nor been made more aware. I haven’t been challenged, haven’t participated…but your post raised the awareness like the challenges didn’t. Thank you and bless you.

August 18, 2014 - 5:11 pm

anthony fowlkes - My freind and i got called out last week. Im going to do it this week and will nhave no problem about. Some people just nees to complain about eveything even if you do a million and one things right there is still a complaint to be made by them. Let them complain and let the money and ALS awareness rise.

August 18, 2014 - 5:11 pm

Sue - The critics are so very wrong. I just read another article which said that this challenge has pulled in almost $10 million in donations, while last year it was only $233,000. Congratulations to everyone who participates, donates, and is inspired by this.

August 18, 2014 - 5:14 pm

Lynne - My family has hereditary ALS and I’ve watched two sisters die of this horrible disease!! My cousin has it now and we are holding our breath that more of us don’t get it. I say ice yourselves all day-to-day I love it!!! The more money that is raised, the more research that can be done!!!

August 18, 2014 - 5:24 pm

Linda Levy - My father suffered from a condition related to ALS. I have seen it destroy his spirit and his body. Thank you for sharing. I am sending good thoughts your way!

August 18, 2014 - 5:26 pm

Amanda - Thank you so much for this. You speak for so many people. Keeping your family in my thoughts and prayers.

August 18, 2014 - 5:31 pm

Lois Butz - We lost our only son to ALS 8 yrs ago this Sept, watching him bravely fight this horrible disease for 4.5 yrs was one of the hardest things we have ever faced. He was so brave and accepting never asking “why me” He is our HERO forever, the worst part of this disease is you become a prisoner inside your body completely unable to move litteraly frozen but your mind stays very clear and intact so you are aware of whats happening, My prayer is that they find cures not just for ALS but all the horrible diseases that take people way too young.

August 18, 2014 - 5:31 pm

Gayle Bohr - Thank you so much for putting this out there. It’s so difficult to describe what ALS does to the person and family. My husband passed away New Year’s Eve 2012 after battling this horrendous disease for 23 years. Yes, 23 years!! That courage and determination is a very rare thing. It was a privelege to care for him and a nightmare watching him fade away and become locked inside his body. My thoughts are with all ALS families out there. It’s time for cure.

August 18, 2014 - 5:32 pm

Tina - I’m somewhat acquainted with your battle. This wretched disease killed my father exactly four weeks before my wedding.

August 18, 2014 - 5:34 pm

Megan Campbell - As a daughter who lost her mom and grandmother to ALS, you have captured the essence of my feelings exactly. Thank you for putting this into such impactful and elegant words. As I am now pregnant with my first daughter, I pray every day that my 50% chance of getting the disease heads in the other direction so that she will never have to experience what we have both been through.

August 18, 2014 - 5:38 pm

Cindy & Robert McQuay - Thank u so much; having recently lost my brother to this tortuous disease, ur article really shows people one tenth of what he and his family endured! I am sad to say I was able to live in denial of the horror of his diagnosis due to geographical distance, but the day I spoke to him on the phone and he was straining so hard to be understood, I was hit by the reality and horror of this disease that can only come from hell! Thankfully , God had blessed us with time to draw closer to him, but not nearly enough! We look forward to seeing him free of the wheelchair , singing Springsteen and dancing his arse off; soon and very soon! Keep up the ice bucket brigade people!! It is working!

August 18, 2014 - 5:38 pm

Sandy Jennings - Thank you. My father passed in June of this year. He had ALS. You’re descriptions are spot on….

August 18, 2014 - 5:40 pm

Sue Robilliard - That was my darling dad’s last few years of life. Living in a body that was dying. Never knowing, as each new day dawned, what he had lost overnight. His mind totally alert. His eyes seeing everything. Those beautiful blue eyes were the only things he could move in those last, terrifying weeks. I can’t imagine what was going through his mind. This man, my hero, unable to communicate. Unable to do anything. We knew his wish was to be at home when he passed, and that wish was granted. Not in bed, oh no. Not my dad. Sitting in his chair in front of the tv. Here one minute, gone the next. Not a sound to indicate his time had come. Even sound was beyond his capability at that stage. I applaud the ALS Ice Bucket challenge. Anything that brings this insidious disease to the forefront of public awareness is more than welcome. It needs research. It needs millions of dollars to spend on that research.

August 18, 2014 - 5:45 pm

krystal - This was absolutely beautiful. My prayers to you and your husband. My loving grandmother sufferers from this daily :( I wanted to ask if you knew of any support groups for us family members whom are having a hard time with this. I thank you. Continue being as strong as you can fir your husband your doing a great job. Many blessings.

August 18, 2014 - 5:46 pm

Kim - This would be a great way to raise money, the only issue is from what I’ve seen if you do the ice bucket challenge you don’t donate. You get wet and that is the end of your journey with ALS.

August 18, 2014 - 5:54 pm

Carolyn - My brother in law has ALS and I have to watch my sister die a little everyday as she watches her husband slowly slip away hoping and praying that someday it won’t be her daughter bc she carries the familiar gene passed on from her father

August 18, 2014 - 5:58 pm

Debi - I, too, thank you for your message. We lost my daddy on Father’s Day 2012….best gift he could ever receive. I recently had rotator cuff surgery, and for a short while, I experienced the loss of use of a hand and arm and shoulder….and I immediately thought of my daddy. So there’s another way to help others understand. Daddy was lucky….he was a veteran and ALS is now a military-related disease, so he applied and was accepted to military disability – for monthly disability payments, covered medical including devices like the power chair and the computer operated with his eyes, a widow’s pension for my mother, life insurance, burial assistance, and more. If any veterans are found with ALS, make sure you take advantage of this! He was lucky to be cared for by the Mayo Jacksonville ALS Team (see their ice bucket challenge!), and I miss him everyday. I am thankful for the challenge, videos, donations, and small steps made every day toward a cure. I click LIKE on every video I see! Love and strength to our ALS families! #icebucketchallenge #strikeoutALS #missyouDaddy

August 18, 2014 - 5:59 pm

Ned - Didn’t the person that created the ALS Ice Bucket Challenge die? He raised $150,000 and created viral video challenge. If this isn’t ALS awareness or funding then I don’t know what is.

August 18, 2014 - 6:00 pm

Connie - THANK YOU!!! You did an incredible job of describing what ALS feels like and what a person deals with through the day. I love how the ice challenge exploded virally!

August 18, 2014 - 6:01 pm

Candi - Thanks for this article! I became familiar with ALS in my early twenties when I watched a movie about a young woman who had it. I do not have ALS, but do have a rare neurological disorder. We recently were able to get a published study done after research and are in the early stages of figuring it out. It’s very scary going through it and I can only imagine what your husband is going through trapped inside his body. I can only imagine what you are going through as his wife. We just have to keep making noise as you said. One day I believe ALS will have a concrete treatment and it’s because of that noise! God bless you!

August 18, 2014 - 6:01 pm

Tricia Davidson - My husband was dx in 2006, and died in 2008. His wish was for us to “let him go”, when he could no longer care for himself. Thank God, we were able to keep him at home, with help of friends and family. We miss him terribly.

August 18, 2014 - 6:01 pm

Becky Crowe - Praying for you. Our lovely daughter in law just passed away last month. She fought a brave battle against this horrific disease. It robbed her quickly of her life…within 2 years. She wanted to help science find a cure so she donated her body for ALS research. Brave young lady who left us to soon.

August 18, 2014 - 6:04 pm

Karen Konkol - Thank you for describing the 10 experiences. My aunt died of ALS. Her first symptom that we noticed was her speech and difficulty eating. I know of others with the same disease. Thank you for sharing what they are feeling or have felt. I hope a cure is found soon. The ice bucket challenges are eye openers and attention-getters. I hope the money comes in as fast as the activities being videod.

August 18, 2014 - 6:06 pm

Joan Michaels - I did the ALS ice bucket challenge tonight and then immediately made my second donation this year as part of my journey to perform 365 acts of Kindness. I don’t know what it’s like to have ALS so I appreciate your list of what it’s like to live with the disease. This ice bucket challenge – such a small gesture to bring ALS into the limelight and the hearts of people who feel helpless in the face of such a devastating illness. We need to band together and know we are doing even the smallest of things to find a cure.

August 18, 2014 - 6:07 pm

Rita Seymour - I share your pain as my mom, God bless her was also afflicted with ALS. It was a long hard battle but now she is at peace. I wish you the very best in the struggle you are facing.

August 18, 2014 - 6:08 pm

Kristi Valasek - Just yesterday my husband and I were talking about how so many people are involved in the ice bucket challenge. From celebrities to friends, so many people are participating in it. And as we were having our own little conversation my husband was asking me questions about the disease. I am a nurse. I know of the disease, but admit I do not know all of the details of it and can not say i have had much experience with it as a nurse. So I looked it up on the Internet to find out more about it. As I was doing so, I said to my husband how isn’t the ice bucket challenge working great, here we are in our home talking about ALS, researching it online to find out more about it, for no other reason than the ice bucket challenge. It was at that moment I realized how remarkable the challenge is in raising awareness about this devastating disease. I hope the challenge continues to spread as far as it can so that as many people as possible have that moment like I did where they stop and realize what it is truly about. Good luck to your husband, yourself, and your family in your battle with ALS from raising awareness to your everyday challenges know that each day more and more people are behind you. Your article truly made me think about what your husband and others go through. You are doing a amazing job in raising awareness as is the ice bucket challenge!

August 18, 2014 - 6:09 pm

Vicki - Wow. You captured my thoughts perfectly. My Dad died in 1983 at 38 years old of this horrific disease. I was 10 when he passed 31 years ago. I have been so excited to see all my family and friends participating.

August 18, 2014 - 6:10 pm

Lori jones - It upsets me that people think this is a waste of time. It’s AMA ing how many people are now aware of ALS. Not only are they doing the challenge, they are educating themselves on what ALS and also donating money to this great cause!
It’s amazing to me how many people are supporting this cause, but tgere is always someone who has to be Negitive!

August 18, 2014 - 6:11 pm

Valerie Trovato - thank you for sharing a little of what it is like to live in that world. I hope that this will help people to think a little more while they are dumping the ice water on themselves about how important the financial contribution is too!

August 18, 2014 - 6:11 pm

Megan Medero - I was watching my dad trying to lift his leg onto one stair. The moment lasted forever. Tears rolled down his face. That was the first time I ever saw my dad cry. It is a mental picture that I will never forget and I will never forget the true sadness that fell over me as I watched. I was in high school and so confused. God bless my father who is in Heaven now. I love you dad and think about you every single day.

August 18, 2014 - 6:18 pm

Amy Kelly - I lost my beloved husband to bulbar onset ALS. I am thrilled by the ice bucket challenge. Raise money, Raise awareness, Raise our voices. The journey of ALS is one that can not be understood until you’ve become a part of it. We are a very small family with far too many members. We need to all work together to create a world without ALS!!!!

August 18, 2014 - 6:21 pm

Connie Wesh - thank you for posting this. This morning my daughter wrote in response to a negative comment about so many posts about this challenge….” most of us have experienced someone with a disease and some of us with a disease that little is known about, so the more people are aware of these things post away let everyone learn..” My husband died in April of 2013 from FTD at very young age .very little known about this disease, so whatever it takes to make people aware .. we had wonderful friends and family and doctors.. but still there needs to be more research to find a cure and most of all a prevention. so post away

August 18, 2014 - 6:21 pm

Treg Charlton - Great writing, Bo. Right there with your family. -Treg

August 18, 2014 - 6:25 pm

Gerardo - From the son of a man that had ALS: Perfect article Bo.

August 18, 2014 - 6:36 pm

Lisa Winchester - Thank you for sharing. Many prayers for your husband, you and your family.

August 18, 2014 - 6:38 pm

Todd Quinlan - Very well written story Bo, thanks for sharing. I’ve been a little miffed at a few people in the media complaining about wasting water……..WASTING!! An increased awareness to such a horrific disease and a huge increase in much needed fundraising is definitely NOTwasting in my books. I’m sure these media complainers have never had their car washed, never taken a shower, or never watered their lawns. They complain about narcissism and the “selfie” generation, yet they start their story with their hashtag name so people can follow them, their headshot attached and all. I took the challenge, poured ice water on my head, donated money, and challenged 4 people from different social circles to do the same……….and I enjoyed every minute of it. Carry on people…….carry on!

August 18, 2014 - 6:39 pm

bo - Megan Campbell – praying with you, friend. Thank you for sharing.

August 18, 2014 - 6:40 pm

bo - Lois – I am so sorry for the loss of your son. Just so, so sorry. -Bo

August 18, 2014 - 6:41 pm

megan - You are a warrior! And your husband is a hero… and this kind of explanation is exactly why I did it. I wish I could donate more but sharing this around might help.

August 18, 2014 - 6:41 pm

Beth Van Handel - I often hear about people with ALS first having Lyme Disease. I’m just wondering if that was the case here? Or was your husband ever tested or diagnosed with Lyme? Thank you for writing this article. It is beautifully written. Thank you so much for sharing.

August 18, 2014 - 6:44 pm

bo - Bless you, Carol – I’m so sorry for the loss of your beloved husband and deeply admire your commitment to one another. I promise to breathe in every minute…and I promise to let go when the time is right. Thank you for that beautiful advice.

August 18, 2014 - 6:45 pm

bo - Marcia J. Gasses – “evil” is exactly the right word. I’m so sorry for the loss of your dear mom. So glad she had you to walk her through that difficult journey. Bless you. -Bo

August 18, 2014 - 6:47 pm

bo - Jon Larson – GREAT question! The ALS Association provides patient care (for instance – they have loaned us many pieces of very expensive equipment) and constant emotional support. They also fund research for a cure. They’re the most impressive, deserving organization I’ve ever been privileged to work with. You can donate with great confidence at http://www.alsa.org.

August 18, 2014 - 6:48 pm

Chuck Sahlberg - I have been a Police Officer since 1977, and seen very nice people die from many causes. But the worst of all was my brother,a lieutenant on a fire department in N.J. He was 40 when he came down with ALS. The stress on his family living everyday watching day by day loosing his strength knowing there were no cure no hope. I to was hurt seeing him from a hard working man slowly dieing, loosing his muscles in his legs , then his arms,then his speech, loosing everything except his mine. The most important thing I learn from his death was his smile. And when he lost his face muscle He smiled through his eyes. I pray for a cure everyday since he past. This ice water challenge could help to fine the cure. Just like cancer fifty years ago was a death sentence and now there is hope when you get cancer. I know, my father died from Leukemia in 1976 and in 1995 I was cure by a bone marrow transplant. God Bless people like you and you family

August 18, 2014 - 6:49 pm

Kellie - Way to stand up!much respect! I’m sorry I cant give much more than empothy.. I have seen several people doing the ice challenge which lead me to your blog and now to your cause and what I can do to help!!! So guess point made!!:)

August 18, 2014 - 6:56 pm

Penny Litchfield - I am so grateful for this challenge. 17 years ago as my Mother after a yr of suffering was diagnosed with ALS. Then I started to make phone calls looking for someone to help us. No one worked on behalf of these people. They all knew of Lou G’s disease but not to much research or support groups. Mom died 6 months later.
Today people are hearing about ALS the more people know the more hope for help and support.
THANKS ICE BUCKET CHALLENGE
YOU MAKE A DIFFENCE
especially to those who once could find no one who even knew about it

August 18, 2014 - 6:59 pm

Kayla - I have see my grandfather pass away from ALS and was the most horrible thing I have ever experienced in my life. I do everything to raise money for reasurch and my husband and I donate 500 dollars a month. I myself did the challenge and also donated the extra money. What many people don’t know about this challenge is that everyone who does the challenge and includes #alsicebucketchallenge the 100 dollars is donated by multiple doners. I think it’s great that adults are doing it and also donating the money. With that being said, the majority of the people doing the challenge are the you kids, like teenagers, and once you get something started with them they don’t stop and they keep going. They are what keep this challenge going and they seem to be having a lot of fun with it. I say we say thank you to all the kids and adults and say turn the other way to the haters.

August 18, 2014 - 7:03 pm

Libby - Thanks for sharing your perspective. I only wish that the disease my daughter lives with had fundraisers and PR and scientists devoted to researching all the different aspects of it. She has an extremely rare genetic metabolic disorder; no treatments, no predicting life expectancy, no going back and fixing all the damage done before her diagnosis. Maybe someday!

August 18, 2014 - 7:04 pm

bo - Adam – I don’t have much good will toward the water argument because I suspect the same people who are making it are also taking daily showers (about 25 GALLONS of water which equals like TWELVE bucket challenges x 365 days per year) which are also completely unnecessary and waste FAR more water than this challenge and have zero return in terms of charitable giving or awareness. This challenge will blow over in the blink of an eye – but those showers will still be happening. I hope the water advocates will still be beating this drum then.

August 18, 2014 - 7:07 pm

bo - Chuck – I’m so sorry for your loss. I agree that the stress and torment of watching a loved one die of ALS is almost beyond telling. We long for a cure – for my husband and for all those who come after him, in honor of your brave brother.

August 18, 2014 - 7:11 pm

Virginia Stone - Thanks for expressing your feelings so well. Only someone who lives it can do that. I lost my brother to ALS only a month after he was diagnosed. As horrible as that was I know for him it was a blessing. Many of the videos on Facebook are my Own family members. I hope their efforts will help someone soon.

August 18, 2014 - 7:12 pm

Lori Bauer - Awesome Article! I have enjoyed being a part of the #icebucket challenge and will continue to support ALS! I have a brother that is mentally handicapped and my heart goes our to anybody that has to watch a loved one go through terrible times ! Just know that your love and support will help each other get through those tough times!

August 18, 2014 - 7:12 pm

Corina Zambon - I watched my mother in law battle this horrific disease, I love this challenge and all the attention it has received, if you don’t get it I truly hope u never get ALS YOU are latterly traped inside your body just imagine it sit totally still for one minute not moving anything at all now imagine doing that for 24/7!!!!!!!!!!!!!!!!!!

August 18, 2014 - 7:13 pm

Laura Esposito - Thank you so much for educating me. I am grateful for the ice bucket challenge for it really brought to the forefront of social media eyes on ALS. My prayer is that through this fun and silly task ALS will be a disease folks understand and also fund research into helping those afflicted. I did the ice bucket challenge, donated toward ALS, and read up on this disease but nothing educated me nor opened my eyes to this more than your words.

August 18, 2014 - 7:15 pm

Pam Barr - Thank you for your posting. I loss a dear friend, Lee, at age 44 to ALS. He left behind a wife and 2 small children. He only lasted 2 years or so from time of dx to the time of his death. He had “bulbar” ALS and his symptoms started with choking, drooling and breathing, instead of the more typical feet/legs first. ALS is a horrible disease.

August 18, 2014 - 7:16 pm

bo - Jamie – oh, sister, you are writing our story. That saliva thing is one of the hidden horrors of ALS and it keeps people stuck in their own homes at the very time when they need to be out seeing the world (I don’t write about it much because I don’t think people would understand.) I’m so sorry for your loss and desperate for a cure. Bless you.

August 18, 2014 - 7:17 pm

bo - Amyrichard1980 – TWO weeks ago? Oh, I am SO sorry. Just so sorry.

August 18, 2014 - 7:26 pm

Lecia West - Thank you for your insightful and enlightening article. My husband died 2 years ago from ALS, leaving me with our young 2 sons to raise. I, too, an attest to the horror of watching your husband decline in the ways your mentioned—- and then trying to reassure your 2 kids that things will “be ok”. To the people who think the ALS challenge is a “waste of water”, GROW UP. We will skip 1 lawn watering session this week in order to dump water on our heads. Are you happy now? I pray no one you love comes down with ALS. If someone in your circle does, perhaps you will feel differently.

August 18, 2014 - 7:31 pm

Kim - Thanks for writing this. Two of my family members were challenged tonight and it gave me the opportunity to talk to my three children about what the disease is. This is clearly raising lots of funds, but also educating the world about what a terrible affliction it is.

August 18, 2014 - 7:36 pm

Bev Burnett - I am a mother of a 48 year old daughter lost to ALS on February 1, 2012. She was a lady in every way you can imagine. After four days of test in the hospital I sat on the end of the bed with tears running down my face as the doctor told us the news she was set up in the bed and no tears her comment was ” Well guess I will have to get me a living will”. Through the whole five months it took ALS to distroy her, she held her head high and never let it get the best of her. The family it destroyed us and still is. The only good this it did was brought a deviorce family closer together. Working as one family for on cause ALS and her. I have heard this sentense over and over “What is ALS never heard of it” so I fell as the mother of a ALS child (and she will always be my child) if the ice bucket crase brings attention to ALS and make people aware of it GO FOR IT.

August 18, 2014 - 7:41 pm

Amy Alderson - Thank you for sharing this , my father passed away from ALS in 2004. I am praying for your husband, you and your family!

August 18, 2014 - 7:44 pm

Catherine Flammini - I did the Ice Bucket Challenge today. I however also donated to the cause before the challenge and again also following doing the challenge. I could never imagine the steuggle and pain that people with ALS and their families go through every single day. My heart goes out to all of them.

August 18, 2014 - 7:47 pm

Alan - Thank you for this write up explaining the what it means to your family. I can only hope more families in this position speak up as well flooding the internet with positive things to say. Together we can make a change and together we can change the minds of the nay Sayers and miserable people. WE have the power to change our world any way we choose!

August 18, 2014 - 7:49 pm

Corie Hughes - I love that awareness is being created for this devastating disease. I lost my husband to ALS in 2010 and his younger brother is now fighting ALS. My husband did not fully lose his voice but lost total mobility of his legs. I remember those days before when he could still walk And he would tackle the stairs. It was hard for him but he would do it , feeling like he was carrying 40 Lbs. He eventually was fully confined to his wheelchair , and that allowed him some freedom to go places. He lived life to its fullest until the end, but it was not easy, however he made it look easy. Always with a smile. And now his brother, different impact for him, he has lost his voice and mobility of his upper body. But he also keeps a smile on his face. My Heros! I’ve never met anyone as brave as these two brothers❤️

August 18, 2014 - 7:51 pm

Corie Hughes - I love that awareness is being created for this devastating disease. I lost my husband to ALS in 2010 and his younger brother is now fighting ALS. My husband did not fully lose his voice but lost total mobility of his legs. I remember those days before when he could still walk And he would tackle the stairs. It was hard for him but he would do it , feeling like he was carrying 40 Lbs. He eventually was fully confined to his wheelchair , and that allowed him some freedom to go places. He lived life to its fullest until the end, but it was not easy, however he made it look easy. Always with a smile. And now his brother, different impact for him, he has lost his voice and mobility of his upper body. But he also keeps a smile on his face. My Heros! I’ve never met anyone as brave as these two brothers❤️

August 18, 2014 - 7:54 pm

Kristin Clark - My cousin, a retired Army Colonel/Nurse, died from ALS in 2006. I went to El Paso to see her the previous year. Although she had braces on her lower legs to keep her feet from flopping and on her wrists to enable her to hold things steady, she was able to walk and drive and type on an electronic keyboard with a display. This is how we communicated the 4 days I was there. She was 18 years older than me, but she was my role model and hero. She absolutely knew what the outcome for her would be, and she was doing everything she could, with the support of her very loving husband, to fight the disease. Though she could not speak, swallow, or eat, she sat with me at meal times and we talked. The keyboard expressed the words, but her sparkling eyes expressed her emotions. I thank people for taking this challenge and donating and raising awareness to help fight this disease. Thanks for those who speak up against the cynical and jaded. Thank you.

August 18, 2014 - 7:57 pm

April Colvin - Thank you for writing this. I have 5 family members in addition to my father who have passed away from ALS as well as now, my little brother just 26, was diagnosed 4 moths ago. He read this and was so happy to see this list. It’s impossible for someone without the disease to fully understand a day in their shoes, but this helps immensely. I pray for a cure but the first step is raising enough funds to support the research needed. The ice bucket challenge? I don’t care what anyone says, it’s raised the awareness and more funds that I ever imagined. God bless you.

August 18, 2014 - 7:58 pm

Ann Cuda - We were fortunate enough to have my dad around for 23 years with ALS. It was more gradual than most cases, but horrible still the same. Doctors were baffled, but we all knew it was partly his will to live! He had 6 kids (ages 6-18 at his time of diagnosis). He was around to see every one of us get married and be here for 16 of his 17 grandchildren! (Last one was born 3 mos after he died). Thank God for our big and close family to all be around to help my mom with his care. We all went to workshops to learn how to care for our dad and to learn what to expect as the disease progressed. It was heartbreaking to watch this proud man deteriorate in front of our eyes. I am so glad to finally see all this “hype” about the ice bucket challenge! I pray that there will be a cure for this terrible disease SOON! Thanks for sharing your article! God Bless all of you and all the families who are faced with this disease.

August 18, 2014 - 7:58 pm

Lyn - THANK YOU! THANK YOU SO MUCH FOR THIS AMAZING WRITE UP!! I lost my mom about 8 years ago so I know how hard it is to explain. I mostly get blank stares back at me when trying to explain how it was to live with ALS…your examples are right on!! This challenge has been amazing for the research and funding of ALS…I can’t get tired of seeing these. I just wanted to say thank you for writing this and let you know that your entire family will be in my thoughts annd prayers!!

August 18, 2014 - 8:23 pm

Matt Fortier - Thank you so much for this article. I believe you both knew my wife Anne via Facebook. She passed away July 9th…from ALS. She was only 45. She would have loved this! Forget the money (don’t get me wrong… is nice too) but I think she would just be glad to see the awareness raised. People don’t realize the incident rate is roughly the same as MS. This surprises people because everyone knows someone with MS so how can the incident rate be the same? While MS is awful in its own right…people can live with MS much longer. ALS is 100% terminal. Anne even had someone say to her once when she said she had ALS, “Well at least it is not MS.” I was like really??? At one point I was literally praying it was MS. So the ice bucket challenge is fun but let’s also hope people learn what ALS really is. It has been around way too long with so little relief for the people impacted. Thank you again for a great article.

August 18, 2014 - 8:30 pm

Darla - My husband was diagnosed with ALS this past March. This article fills me with emotion as I watch daily at my husbands struggles. I love seeing the awareness and dollars donated for ALS awareness & research. Too many people have no clue how horrific this disease is, and I include myself as I had no knowledge prior to my own husbands illness. I see so much appreciation in his eyes as I play each Facebook video of those participating in the ALS ice bucket challenge. This is so important. This matters. Keep it going.

August 18, 2014 - 8:35 pm

Abby - Thank you thank you for sharing your thoughts! I grew up watching ALS take over my grandfathers body. This cause is very dear to my heart and I’m so glad to see that people are not only getting involved with the challenge but donating as well. For those of you who haven’t experienced this disease first hand, please don’t just take this challenge and then forget about ALS. Continue to educate yourself about ALS and get involved!

Bo, your family is in my prayers!
-abby

August 18, 2014 - 8:35 pm

Amy - I am so humbled by everyone with the ice bucket challenge…. My mom passed away from ALS…..When she passed she had lost all use of her body…. she only had control of her eyes!! I pray that someday a cure will be found….

August 18, 2014 - 8:36 pm

Lisa Huff - My father passed away March 6, 2014 from ALS…..as long as I can remember he was so strong and was able to do anything and everything. We watched him deteriorate to nothing but skin and bones unable to talk to us, but knowing he still loved us just by looking in his eyes. He was married to my mother for almost 50 years, was the proud father of 12 kids, grandfather to 14, and great-grandfather to 1. My heart aches every day missing him, but is relieved he isn’t living in his own personal hell and relying on others to do the simplest task for him. I pray to God there is a cure found, and that the research continues. Thank you to all who have done the ice bucket challenge and have also donated for research.

August 18, 2014 - 8:44 pm

Rory Kaddatz - Thank for sharing your story. I agree 100 percent my mother just passed away from this horrible disease. To see her suffer with some of the simple things we take for granted in life was just heart wrenching, just the fact that the only way she could communicate the last few years was through her ipad was frustrating for her. Yes before she was diagnosed I only knew of this because of a baseball player so I think this challenge is awesome if for anything to at least raise awareness. So people keep doing these challenges and please support your local chapter of the ALS foundation maybe one day this horrible disease will be but a memory.

August 18, 2014 - 8:54 pm

Rachel - What an excellent article and opinion. I lost my husband 6 years ago at 33 to ALS. We could not have made his last few months livable without the help and support of the ALS Association. I was able to donate my husband’s electric wheelchair to them as they gave us a “loner” while we were waiting. I am so grateful that people are out there donating 10 to 10,000 to this worthy organization. While a cure wasn’t developed in time for my husband this is the group who will work tirelessly to find a way to stop or slow down this horrible disease. This ice bucket challenge has brought awareness and brought people together for a united cause. The ALS Association can’t cure the currently incurable but it does provide hope and support. Good luck on your own ALS journey. Know that you are not alone.

August 18, 2014 - 8:55 pm

Melissa - I love the way you explained it. My mom has ALS. She started with Bulbar, which robbed of her voice…we have been fortunate in that it has been slow to attack the rest of her body, but to be robbed of my mother’s voice, to no longer hear her hum and sing as she would go about her day, to have painstaking long conversations as she struggled as long as she could to use her own voice even when it was only understood by those closest to her, to realize that even those closest to her could no longer understand, to realize you will never hear the words I love you from the one you heard it from first….those are the cruel things ALS inflicts.

August 18, 2014 - 8:56 pm

Pam - Bo, you said it perfectly! I just lost my Mama to ALS. I watched her struggle and suffer daily. And the aspirating on food and her own saliva was excruciating! I can’t ell you the number of times we were at the ER or hospital and nurses and doctors had no clue. Most people don’t even know it by Lou Gherigs anymore. They just plain don’t know! Thank you for putting this out there! Mamas gone but I will continue to pray for those still fighting this battle!

August 18, 2014 - 9:00 pm

bo - Aw, Matt – we LOVED meeting Anne in Washington DC and communicating with her via email after that. She was one in a million. Thank you for sharing your thoughts – I couldn’t agree more. Bless you!

August 18, 2014 - 9:03 pm

Dave Corn - I love the ice bucket challenges because they have awakened the love and compassion in the hearts of America and it’s drawing focus on a hidden enemy hidden too long. They are also simulating much needed monies that will impact the lives of so many suffering from this preditor…This is the love we share with our family who are under attack by this dreadful illness. I respect and praise you all for what you are doing!

August 18, 2014 - 9:04 pm

traci lea young - Just wanted to say thank you for the information. I honestly wasn’t real sure what ALS was, I appreciate you taking the time to explai and to raise awareness. God Bless~

August 18, 2014 - 9:04 pm

Ivery - I read your blog post BECAUSE I’ve seen the ice bucket challenge everywhere and was interested in whether it was offensive or helpful to you and yours. And from your one post I now can start to comprehend ALS. Thanks Ice Bucket Challenge.

August 18, 2014 - 9:06 pm

Mary Church - This & any other way to raise awareness & research funds is great in my book! My Brother (in law) had this & died in the last plus year… My husband has a motor neuron disease of the A.L.S. family… V. A. hospitals don’t pay for genetic testing… but this is either spastic paraplegic or P.L.S. with out Neurologists who are trained how can people who have these diseases even be treated… Answer… they really cannot. I hope more will do such public challenges as this… it could save lives!

August 18, 2014 - 9:08 pm

julie - You are an amazing writer. Thanks for putting words to what has been in my heart. My husband Mark died in 2003 from ALS. He was 49. I hope this ice bucket challenge continues. WE HAVE TO FIND A CURE! NOTHING LESS…. CURE ALS.

August 18, 2014 - 9:08 pm

Michelle McInturff - I have three cousins and a great uncle that have died from ALS. I was not there to see what they and their families completely went through but I heard the stories and read one that my Great Uncle wrote about what he was going through until he could not longer type then his wife finished for him. It a horrible disease and I hope even more money is raised to find a cure.

August 18, 2014 - 9:10 pm

Sharom - I just wanted to tell you- what a description- thanks for shedding some light- I wish you and your family strength and humor when dealing with this- I am so sorry any person has to go through this. I will be donating now!

August 18, 2014 - 9:11 pm

Lauren Walker - Bo,

I just don’t have the words to say how sorry I am for you all to be dealing with this horrible disease. Thank you for posting that list of empathetic experiences. I actually did one and pretended my laptop was a fork. It’s amazing how much that small action really puts it all in perspective. I admire you and your family’s strength. God bless you all.

Lauren

August 18, 2014 - 9:13 pm

paige - I really dont know what to comment. I am sitting here reading your husband’s story with tears running down my face. How hard it must be to love someone so much and watch them lose so much. Thank you for writing this article. You have opened up alot of eyes, esp. mine. I will pray for you, your husband, family and friends. I wish you peace, and strength. God bless you.
Paige in Pennsylvania

August 18, 2014 - 9:43 pm

Cliff Murray - Awesome stuff Bo. My heart aches for you and your family. You are warriors!!!!

August 19, 2014 - 6:03 am

Wendy - Brilliant.

I am an STNA. In my very first class our instructor had us do several of the suggestions to “walk a mile.”
The author is correct, at least we had the option to stop…
Hateful, evil disease.
I hope the ice bucket challenges continues to explode all over.

The hell with anybody who gets annoyed.

August 19, 2014 - 6:06 am

Ann - Dear Bo,
God Bless you and your family. Many say this silliness does not bring awareness but I will tell you that contributing $100 to ALS was NOT on my list of things to do this summer but it’s done now!
You’re in my prayers
Ann

August 19, 2014 - 6:09 am

Brooke Pillow - Does it really bring attention to the disease and/or research for the disease? Truly, I think more than half the people who are doing this are doing it for the attention. How many people do you think are actually taking the time to learn more about ALS and/or actually donate money to the cause after they dump that ice bucket over their heads? I think there are much more productive ways to spread awareness. This is just another Facebook/social media shenanigan in my opinion. Waste of time and water.

August 19, 2014 - 6:11 am

Becky - I lost a friend to ALS a couple years ago. I worked with him, so I watched for 3 years as, day-by-day, he went from biking to work every day, to drinking his coffee through a straw, to requiring the assistance of 4 people to get him from his desk to my car so I could drive him home. He said once, “There will never be enough money for ALS research, because ALS doesn’t have millions of survivors telling their stories the way breast cancer does, for instance. It kills all of us.” That is why I have mixed feelings about the ice bucket challenge. On one hand, there have been unprecedented amounts of money raised for ALS. On the other hand, how many of these people are really any more “aware” of the disease than they were before they dumped that bucket of ice water? I’ve seen at least 100 of these videos on my news feed, and I doubt even 5 of those people could tell me what ALS stands for, much less the nature of the disease or what it’s like to see someone become a prisoner in his own body. When I was struggling with the loss of my friend, they put no effort into trying to understand, so why would they now?

August 19, 2014 - 6:18 am

barbara jean - I cared for an ALS man, as an RN, he needed around the clock nursing care as his disease was very advanced and was on a respirator. Five years that I knew him he advanced from being able to walk with difficulty, bath himself with very little help to being totally dependent upon his family and nurses. The bravest man I have ever met, and a loving patient family. It was my honor to be his caregiver and friend. His faith carried him through. He wanted to live so much.

August 19, 2014 - 6:24 am

Monica - Thank you for sharing this with us. It not only helps us to understand truly what is like to walk in the shoes of someone with ALS but also putting things in perspective. We can use anything to raise money and awareness. If people choose to use the ice bucket challenge or something else why not.

August 19, 2014 - 6:28 am

Joe manz - At 91,my dad died of ALS. His muscle functions decreased until it killed him but up to the last day his mind still was sharp. So ALS affects your muscles, not your mind. Your trapped in a body that doesn’t work and your mind knows it.

August 19, 2014 - 6:29 am

Kris - Seriously you people need to step back and think about what has happened here. Regardless of how annoying it is to you or if some people are doing it without donating, over 15 million dollars has been raised and even if it’s only $1 or $1000 it’s something

August 19, 2014 - 6:30 am

Lisa Voisin - I lost a dear friend to ALS. Thank you for posting this, I could not have said it better.

August 19, 2014 - 6:37 am

Claire - My mother is suffering from a similar disease. Progressive Supranuclear Palsy. It is a rare form of Parkinson’s. More research is need for all these “rare” neuro- degenerative diseases. I did the challenge and send money because what they learn about ALS could benefit PSP or Parkinson’s and other illnesses. Thank you for sharing your thoughts with us.

August 19, 2014 - 6:37 am

Pat - Bless you and your family. My heart goes out to you all

August 19, 2014 - 6:44 am

Debbie Todd Jones - Bo ,thank you for putting my feelings into words! My husband of 33 years died of ALS and it still hurts everyday for the agony of watching someone you love go through that! God bless you and all those who are bringing awareness to the disease. But most of all God be with those who have the disease!

August 19, 2014 - 6:44 am

Rhonda Schulz - I also agree with everything written in the article. My mother has ALS and it is a hidden disease. People don’t know how to react as a persons abilities and speech leave them. With each passing day or week things get harder. I think this is a great way to raise awareness.

August 19, 2014 - 6:47 am

Melody Hubbell - My grandfather (in his 80s) showed symptoms of ALS in Nov. 2004. He passed away in January 2005. It was awful watching the disease take him aggressively. Although my family was heartbroken, there was peace when he had relief.

I was in college at the time and was the only one in my family that knew how to “Google” like a pro to find answers. It was astonishing when I couldn’t find that much information online!

Maybe the ice bucket challenge is narcissistic. Who cares. It’s raising some sort of awareness that was lacking before.

August 19, 2014 - 6:49 am

Stacey - Thank you for this blessing of new knowledge and insight. You are an everyday hero, to be sure.

August 19, 2014 - 6:50 am

Julie A Kutz - I sat by and watch my nephew Jerry be eaten alive by ALS. His mom took care of him for over 10 years. I do think that is why he fought so long. He was a Tall and very strong man who played football for the NDSU Bison when they found he had ALS. I watched him change over the years. He was and still is the strongest, proudest, loving man I will ever know. He stayed strong until his last breath. He taught me so much. This is a terrible disease and we need to find a cure. So I do not care if people poor buckets of cold water or rocks on themselves. We need to get the word out on how ALS takes everything from you. I pray for everyone who ALS and for their families. They need our strength and support. We need a cure and if this helps bring awareness then so be it.

August 19, 2014 - 6:51 am

Colleen - Thank you for sharing this with everyone to read and to become more aware of ALS. God Bless…

August 19, 2014 - 6:57 am

Martha - Bo,

Can you tell me how Steve was diagnosed? My husband is 35 and started having neurological symptoms in 2011. We have been to Mayo and NIH. As of right now he has not been diagnosed with anything. Mayo thought it could be PLS, but they were not 100% sure. We have also heard Stiffman Syndrome and ALS. Of course ALS is my biggest fear. Luckily they aren’t sure yet. We see a specialist at UT Southwestern in Dallas, Texas.

My husband’s symptoms started by loss of balance and falling. It went from his left leg to right. He used a cane and now walker. His arms are effected and now hands. He hasn’t lost any muscle mass. His speech has just lately become strained.

Thank you for sharing your journey!

Love,
Martha-Nell Kennedy

August 19, 2014 - 7:00 am

john - the problem is, a majority of the ppl (at least the ones i see on my facebook feed) who do the ice bucket challenge are still not aware of what ALS is and are not donating. they are just sheep following the social media crowd.

im aware that all this attention-whoring brings ALS to light and more money has been raised but at the end of the day, if a majority of the ppl who do the ice bucket challenge to raise awareness are not aware themselves, it’s pointless.

August 19, 2014 - 7:02 am

Kambrea - All I can say is thank you for all of this. ALS has taken 3 of my family members and now my dad, my hero, my biggest supporter has been diagnosed with ALS. I have thought a lot lately about how to bring more awareness to this disease, and so when I started to see the ice bucket challenge on Facebook I was overcome with emotion. Thank you from the bottom of my heart! Prayers to you and your family.

August 19, 2014 - 7:07 am

donna - my heart goes out to everyone with als and to those who love someone with als..my grandmother died 21 years ago with this horrible disease…we need to find a cure fast and NOW!!!..I think it is absolutely wonderful that people are participating in he als challenge….why?…because EVERYONE is talking about it and becoming aware of this horrific disease….and its making people more aware of it…because just like als makes people silent…this disease is a silent disease…its time that everyone becomes aware of such a silent killer!

August 19, 2014 - 7:08 am

Tina - Noone is quiet when it comes to breast cancer awareness. It’s all over the Web with arm bands, pink & a whole month dedicated to it. I’m still learning about ALS but am all for this ice bucket challenge. Not only are they bringing attention they are donating. If there were local walks or bracelets, etc. I’m sure more would support& advertise. My prayers are with you & your family.

August 19, 2014 - 7:10 am

Sara Lynn deFuniak - A friend’s father died of ALS, one of the cruelest diseases known to man. It was gut-wrenching for the large family of this fine educator, and I learned a little about the disease through them. Now, under the umbrella of the Muscular Dystrophy Association, which covers AlS, I truly understand the ramifications of another related disease, Duchenne Muscular Dystrophy. My nine year old grandson is afflicted with this disease, still doing relatively well due to steroids from England and various supplements that he takes. But – it is a terminal disease, affecting mostly little boys, diagnosed in their first few years. It progressively robs them of their muscles. The heart and lung are muscles, so inevitably, they fail. At times, we wish that we’d thought of the Ice Bucket Challenge to raise funds for drugs now in clinical trial which will help our Beau, but are happy that the proceeds of this media-generated campaign will monetarily help those who suffer with ALS. I find that most people who join this challenge don’t understand what the disease is that they are participating in. Now is the time for a massive campaign explaining ALS, as well as Duchenne Muscular Dystrophy is waged to inform all those who thought the Ice Bucket Challenge was a fun thing to do. What ALS as well as DMD need are your dollars, folks, and your interest in the diseases and who they affect. Please understand what these people and little boys are dealing with, opening your hearts and billfolds, and give unconditionally to treatments and cures for these awful diseases. Their lives depend of every one of us, and as for my family, our gratitude would be boundless if people truly understood what is happening to these little boys, who might make it to their twenties before they are gone, and they might not. HELP US! If you want to douse yourself with a bucket of water, sobeit, but please understand the disease you are helping to fight.

August 19, 2014 - 7:16 am

rglad2cu - this is the MOST informative post I have read to date! and so well written. I have recently learned that my brother, my bestest friend I ever had has been diagnosed with this “unknown” disease. he does not like to draw attention to himself and does not like anyone doting over him- I have in a sense ,already lost my brother (due to family complications and lack of communications) over ten years ago, however to get word of him being diagnosed with this disease was a blow! when i tried to learn more about it ( I had NEVER heard of it ), like so many have said there is not enough information about this for anyone to read or learn more about the trials and challenges the inflicted face. Your courage and insightful explanations ( and your “challenges” ) have been very educating in helping me to understand what he may be going thru, for that I thank you. because of your words, I hope to some day be able to reunite with my only brother, and help him deal with this horrific disease. As far as the ice bucket challenges, I for one would have never ever known half of what I have learned. these “wasteful buckets of good water” will some day be the root of some break-thru that will help those who (I would never wish this disease on my worst enemy) complain selfishly. these ice bucket challenges is what IS bringing the needed attention to this horrific disease. Once again,a very hearfelt and sincere “Thank You” for sharing your pain outloud with all of us who have no clue as to the mere existance of this disease not to mention its trials, challenges and defeats. You have touched my heart and soul and have inspired me to do more talking and sharing and reading and doing for a cure and research to help those who have absolutely no choice but to deal with this horrid disease. May god bless you and your family and your husband, and anyone else who may be dealing with ALS.

August 19, 2014 - 7:16 am

ALS Ice Bucket Challenge | ASPIRING TO INSPIRE - […] I found this incredible article that gave me a whole new perspective and understanding of what taking this challenge on is actually doing. http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challen&#8230; […]

August 19, 2014 - 7:17 am

Jessica - I came across this when a friend posted it on Facebook, and until I read it, I cringed every time a friend shared an ice bucket challenge. Thank you for sharing your perspective. You have helped me view the world with more empathy and less cynicism. I just made a donation to the ALS Association, and I sincerely wish the best for your husband and your family.

August 19, 2014 - 7:22 am

Amy Cottrell - Thank you for this incredible, honest article about this horrendous disease. My brother-in-law, Derrick Hatcher, was diagnosed just 6 months ago with ALS & it has been gut-wrenching to watch. We do not take any solace in knowing others are suffering as well but this will help others understand much better what my sister, Beth, and Derrick are enduring. I am immensely grateful to Pete Frates’ group for starting this phenomenon and to anyone that furthers the cause!

August 19, 2014 - 7:23 am

renee - hi Bo,
I agree with you whole heartedly. Thank you for being so brave and sharing your experience. My father had, and my sister has Huntington’s disease. It’s a horrible experience. The ALS challenge has moved some of my friends to donate to ALS and to HD. I say – keep pouring those ice buckets! Let’s make it known that there are diseases of the brain that desperately need funding and research.
God bless..

August 19, 2014 - 7:27 am

Janeann Lancaster - Thank you for sharing this – my dad succummed to ALS and your list of things to do to feel like you have ALS I have posted on my facebook page because it is sooooo true – much love to you and your family – I know it’s not easy

August 19, 2014 - 7:30 am

Tim - It is great to get the information from someone who is living this.
But from someone who teaches marketing ideas. This is the best idea for a fund raiser. Its FREE ALS foundation is not having to do any advertising to get people to donate money. Most charities spend close to if not over half the money raised to market to the charity to raise more money. This is not the case, the people of the world are advertising and raising the money for you.
Again great to think of it from their shoes, but never turn your back on others giving you FREE marketing.

August 19, 2014 - 7:35 am

Loretta Meyers - Thank you. My Uncle Bob was diagnosed with ALS 4 years ago. He too is bedridden and no longer able to move or speak. It is a horrible horrible disease and needs to be eradicated. I cannot even imagine his waking day after day, to lie in a bed motionless, unable to speak, to enjoy a simple conversation, to walk to the bathroom or even in the sunshine. So I would dump a bucket of ice water on my head for the rest of my life if that is what it takes to get funding for research for this hideous disease!

August 19, 2014 - 7:38 am

Dr Denise - Thank you for sharing your life and your husbands life with us to give us a glimpse of what your reality truely is. I admire your strength and boldness to be a voice for him and for ALS. Blessings to you and your family.

August 19, 2014 - 7:38 am

Lucy Karen Clay - Bo, your comments re. the ALS Ice bucket challenge are touching, informative and powerful to this message. Thank you for sharing. As you will see if you have a chance to read my blog post “The Eagle” and see the web site, it hits all too close to home for me. The love of my life lived with ALS for close to 10 years, (or many more)prior to his official diagnosis. The Lord led him on how to LIVE with through it. God is good. You are clearly called by Steve’s side and how comforting for him to know that. I will be in touch. Please feel free to contact me. I now know of many tools, resources, forms of healing which God revealed to Jack which brought back his quality of life from not speaking or walking to an independent, strong man again. I would love to share. ALL GOD. Shalom, ~ Lucy
http://www.thesimplicityproject.org/thesimplicityproject/the-eagle-2/

August 19, 2014 - 7:39 am

Gman - Nobody would be talking about ALS right now if it wasnt for the Ice Bucket Challenge… Free marketing for a good cause

August 19, 2014 - 7:44 am

Karen Richard - My prayers are with you and everyone suffering from ALS. My dad and his sister both died from this horrible disease. It was just terrible to see my dad die before my eyes. My mother religiously took care of him for 5 yrs. I lived out of state but everytime I came home, I helped. My help did not even come close to what my mother did for my father. He died peacefully. He took his last breath and smiled. I am so thankful for this. The ice water challenge is appreciated since this has brought more awareness to ALS than anything else. God bless you and your husband during this difficult time.

August 19, 2014 - 7:46 am

Sally Ward - My mother died from ALS….just horrible…but she showed me…that no matter what is happening…smile, enjoy every moment one has….I’ve recently had 2 major illnesses and people ask me how I handle everything and look so good…I SMILE !!!!!!! Laughter really is the best medicine ….

August 19, 2014 - 7:47 am

Jennifer - I don’t think anyone doesn’t want to help or is being insensitive to the struggles of those with ALS. I believe some are concerned that the US is in it’s biggest drought in history and looking for alternatives to raise funds without using precious clean water. Why not pool water or collected rain water.

Everyone needs to have an open mind and see the grey instead of the black & white.

August 19, 2014 - 7:48 am

Joanne - See now…I misunderstood the ice bucket challenge…I thought you had to donate either way…but you donated MORE if you didn’t want to do it.

I’m toying with the idea of a 10 day ALS challenge…let’s raise REAL awareness about ALS…challenge people to pick one of the ten “walk a mile in their shoes pionts” each day for 10 days…get a broader range of people understanding the hell that ALS patients endure every day!

August 19, 2014 - 7:48 am

Adam - I’m one of the “cranky” people and disagree that the “anti-video” movement was related to not spreading the word, not collecting, or related to the claim of “curing ALS”.

I would bet the majority knew a little of what ALS was about – at least the gist that it is a debilitating disease.

The cranky part went towards 3 major points:

1) Little information about ALS was shared the videos or the accompanying text AND until someone along the line started being “cranky” it was dump OR donate which seemed wrong.

2) It was mostly about themselves and “challenging” their friends in the video as opposed to “requesting” a donation – almost like you need to donate this THIS cause or else. Bummer that it wasted an opportunity to talk about a longer lasting solution of donations and volunteering in general across the board. Certainly no offense as ALS is horrible, but would’ve been awesome if people spread the wealth and shared real info.

3) It became about dumping and wasting amounts of ice and water which itself is a valuable resource. We’re wasting one resource to benefit another cause. Again until cranky people started complaining, now I’ve seen more jumping in cold pools and people skipping the ice.

August 19, 2014 - 7:54 am

Lisa Cohen - my father died of ALS so i know what you are talking about. anything than can be done to raise awareness and money to fight this disease is a good thing.

August 19, 2014 - 7:55 am

Morgan - This is all well and good. But is it actually raising any awareness of the lives of ALS patients? I don’t see that at all. I see a bunch of people having fun pouring ice on their heads, hoping their video makes them more popular. Did any of those people who chose not to donate money and make a selfie video learn anything about ALS? Did they meet anyone with ALS? Did they even see an ALS victim? Could they pick ALS out of a line-up?

It has raised a few million dollars more, which is great. But for most people, it is just a fun way to do nothing relevant to the problem while flirting with fame.

I am pretty sure that If I had ALS, what I would see is a bunch of people having fun in the name of my disease, while not actually doing anything to help. “Haha, look at all these happy people doing shit I cannot do to avoid donating to a cause that might help me. Thank you, internet.”

August 19, 2014 - 7:56 am

Laura - Thank you for sharing and God bless you.

August 19, 2014 - 7:57 am

Faye Wachs - I understand you are in a difficult an painful situation. But you make a lot of assumptions about others that are shallow and mean. I object to marketing campaigns that claim to raise awareness but instead are a we t shirt contest. These videos are more insipid than cat videos because they claim to raise awareness when in actuality, to me, it trivializes a disease and replaces information with entertainment. Private funding is not the answer, public funding and commitment to research is. In the end, ALS will get a one time cash infusion, when long term research and health care is. As the work of Samantha King so aptly demonstrates, campaigns like this may actually hurt funding because it creates a false perception that private donations have made up for public cuts. It’s not even close. Also, your criticism of your doctor is unfair. There are thousands of illnesses and a family practice specialist would not be treating someone with ALS. And lastly, I have seen enough videos of underage girls in wet t shirts to conclude ALS chose to sexualities kids to raise money. That sort of ethical behavior is abhorrent. Please consider how your false accusations and mean comments about how shallow others are may hurt your cause. And lastly, many more people die from lack of access to water worldwide- so consider that your problem is a First World one. So don’t denegrate environmental concerns. You look like the shallow one then.

August 19, 2014 - 7:59 am

Linsey - What a SUPERB post! Thank you so much for sharing your story and thoughts regarding this topic.
My husband’s father died from ALS at the age of 44. My husband is now 43 and although he doesn’t talk about often, I know he thinks about it and as he is almost his Dad’s age when he died, I feel that he may have fears that he will get it too. I know I have some thoughts and feelings about it but I don’t want to upset him by bringing it up. The Ice Water Bucket Challenge has allowed the lines of communication to open up somewhat, which is a plus. I’m so grateful that someone triggered this phenomenon and raised massive awareness of ALS and funds for research. I greatly appreciate you and your sharing this on your blog. You and your husband and family will be in my thoughts and prayers. Thank you and God Bless.

August 19, 2014 - 8:02 am

Jennifer - Thanks for this! I worked for The ALS Association and since learning about and working with the families its been my main cause. I think this is a great way for people who don’t understand ALS to get a glimpse. God Bless!

August 19, 2014 - 8:03 am

D Levi - Thank you. Great post. If noticed every single person smiles and laughs when they are done having water poured on them. Makes me smile. Blessings to you and your family.

August 19, 2014 - 8:05 am

Ice Bucket Challenge - Carrie and Ricardo Robaina - […] news feed, feeling left out or think it’s just a gimmick, I challenge you to read and talk this article about the day in the life of living with […]

August 19, 2014 - 8:08 am

Rhonda Raber - Thank you for posting this article. I think the Ice Bucket Challenge is a great way to bring awareness to this awful disease and to help raise funds for research and hopefully provide for some of the needs of those living with ALS who need help. I was a regular attender of an ALS support group when our family was caring for my husband. I remember one man who came with his daughter. He had just been diagnosed so the realities were still sinking in and it was overwhelming them. He had no insurance and the ALS was affecting his ability to work. They didn’t know what to do and they needed help. The ALS clinic in Indiana has a loan closet that helps by loaning needed equipment. They can use donations of equipment and funds.

My husband was diagnosed with ALS in August of 2007. It started in his hands and then his feet. By the end he could only move his eyes. This happened over a two and a half year period. He passed away January of 2010. It never had any affect on his mind. So I think you could add this to your list – #11. Imagine losing the use of a muscle and then another one and another one and another one. Eventually making it impossible to do anything for yourself, knowing all along what is happening and knowing there is nothing you can do to change it.

I pray that someday soon it will be discovered what causes this disease and a way to treat it and a cure.

August 19, 2014 - 8:08 am

shelly T - Thank you for sharing your heart with the world. I am a nurse and assisted in the home care of an ALS patient. I was horrifying to come in day after day and visibly see the decline in Freda. But what was beautiful was to see a family rally together and love and care for their momma. It has been several years but I will never forget going to the home a feeling the peace and love the family found in those last days. I pray that same peace be yours while you all raise the roof and make a ruckus for your loved ones. God Bless

August 19, 2014 - 8:08 am

Ashlie - I think its amazing that people rally behind these “challenges” . . . I did one earlier this year, It was the Ice Water/Cold Water Challenge but it wasn’t for ALS. Firefighters were challenging others to help raise money for the Fallen Firefighters. Lots of money was raised very quickly! We had just recently lost two firefighters in a house fire, one known by my firefighting husband. So it was a close and personal challenge. We took the challenge and still donated. We also dared people to do it and said if they did we would donate on their behalf if they didn’t they had to donate. So it wasn’t just do it and don’t donate or don’t do it and donate. Money was donated no matter what! I love the idea of getting sponsors who will donate “x” amount if you do the challenge. Can you imagine the force behind a pumper truck with a water canon shooting ice cold water at you? I can! It can be a fun and easy way to get others talking and raise some money for the cause! And no water was wasted as we had to do a pumper operation test anyways, btw it passed its test as it knocked most of us down! Many of our other firefighters plunged into not completely thawed Lake Erie and challenged other departments to do the same. The Challenge quickly spread to other forces, like Police Departments challenging officers to make a donation to organizations to help officers families killed in the line of duty. I remember my officer friend jumping into a very gross pool that had not been maintained while the house was in foreclosure. Again lots of money was raised! So while the ALS Ice Water Challenge was not the first of its kind, it is an Awesome way to get people talking!!!

August 19, 2014 - 8:12 am

Buckets of ice water - […] The point of this campaign was to raise awareness about a tragic disease that often goes unnoticed (See this article). […]

August 19, 2014 - 8:16 am

Dianna Dague - Thank you so much for writing this article. My sister passed away in June of 2010 and we had to watch this disease steal her life for 7 years. It truly breaks your heart to see what they have to deal with. I LOVE the attention this “Ice Bucket Challenge” has brought to ALS. As for the money – the last I checked they had raised over $15 million which is a huge jump from the normal 1-2 million a year. I say Keep it coming!!!

August 19, 2014 - 8:19 am

Carin W - Thanks so much for sharing this with all of us. I watched my grandmother die from ALS and it was the most horrific thing I have ever had to be a part of. Anything that raises awareness and helps fund research I am truly grateful for.

August 19, 2014 - 8:20 am
August 19, 2014 - 8:20 am

Connie - Thanks so much from the bottom of my heart for you and your husbands courage to tell your story as you journey through this fight with ALS. I remember all to well the fight. My mother fought ALS for 3 months, it has been 30 years since her passing. Not a day goes by I don’t remember her pain, and frustration. I have seen more about ALS in these past few months than I have in the past 30 years. God bless all the people that donate, and take the challenge. Most people don’t realize that the funds raised actually help the families too, with hospital visits, test, supplies. The research is vital to. The research may have found new drugs that may help slow the progression. Maybe we can get closer to the cause of ALS so no other family has to suffer.

August 19, 2014 - 8:23 am

Angelica Pando - Up until this ice bucket challenge I’d never heard of ALS. You are so right, it’s raising awareness to millions. God bless everyone suffering and may we find a cure someday.

August 19, 2014 - 8:23 am

Karry - Thank you so much for this post. I was diagnosed with ALS in March of 2014. Every day a new challenge arises for me. When I told some of my friends they had no idea what ALS was. Their reaction was well you caught it early. I had to explain that it doesn’t matter. There really is nothing to treat this. It’s a horrible thing to live with. So yesterday when the negative postings started I was upset. People need to be aware of this horrible disease. Thanks for your support.
Karry

August 19, 2014 - 8:23 am

Debra McFadden - I’ve heard of ALS, but until I read this I knew very little about it. I’m having to wear a stabilizer on one leg while taking care of two Grandkids , and climbing stairs a lot. Facing surgery in the near future. Praise God for stabilizers and stairs! My thoughts and prayers go out to the families touched by ALS. May the buckets continue to flow until a cure is found. Cats, politics, and all other humdrum…..Let It ALL Go until these people are helped!

August 19, 2014 - 8:27 am

Doris Schmidt - Thank you for writing the article on what it is like to be an ALS patient. My husband died of ALS in 2008. They are locked in this body and have no control.

Watching someone you love get weaker as the months went by was very hard for myself and our family. One year he was out doing all the farming himself to the next year needing help from me and our three sons.

I think the ice bucket challenge is an awesome way to spread awareness of ALS and to raise money to help find a cure. All of my kids and grand kids have done the challenge and I will do mine in a couple days when my grand kids will be together to pour the ice and water.

August 19, 2014 - 8:30 am

Alli Malone - Thanks for an informative article on this disease. I am living it,and it is not easy on so many levels! I was diagnosed with AlS in Sept. 2013, almost a year now! How long do I have? Only GOD knows! I wish to Thank each and every celebrity, family member and friend who take up the Ice Bucket Challenge!!! Scientist need to find the cause, so we can develop a cure!!! Awareness of any disease is a step toward prevention! Please take that first step!!!

August 19, 2014 - 8:33 am

Brianne - I dont see what the big deal is. Majority of the people are completing the challenge as well as donating, why make a big deal about the challenge if they want to pour ice water over themselves let them dont complain about it

August 19, 2014 - 8:41 am

susan fredriksen - My husband died 3 months ago of ALS. He also had FTD (frontal temporal dementia) as part of it. A “double” whammy. Actually “triple” whammy as he lost the physical, his cognition, personality and thinking (and judgement and ability to “think straight”) was affected. And he kept awareness that he couldn’t think right (had been in the “mensa” IQ level). To watch his frustration and pain as he struggled to talk and express himself- the physical problems of voice and speech, but struggling to find the words and string them together. Heartbreaking.
Here is a video I have used to share with others that is “short” and describes ALS- it was done for Steve Gleason (former Saints quarterback who now has ALS) and the video is done by NFL players and coaches. https://www.youtube.com/watch?v=oxoBl5zZgNM

August 19, 2014 - 8:41 am

Teresa W - I think that the ice bucket challenge has brought great awareness of ALS. My sister was one of the people that did not know what it was all about, but now she does. It does make a difference. I had a dear friend who died from ALS. It is a horrible disease. I have been challenged and will do it not just to raise awareness, but out of great respect for all of those who suffer from the disease, for those who have died from the disease and lets not forget about all of the people that surround a loved one that has the disease…they suffer too. May our Great God bless them all today and always.

August 19, 2014 - 8:42 am

Carol - So I usually never comment on blogs I read (and enjoy), but felt I had to throw in my 2 cents. I read the ‘waste of water’ article – well, about that far and got annoyed and stopped. How about the people that whine that the stars/celebs are not donating and doing the challenge only – they aren’t listening…all the celeb videos I’ve seen said they have/are donating and here’s the challenge acceptance and now I challenge so-and-so! I love it – I think it’s been a great way to get the word out to a world that maybe doesn’t know. I hope your blog goes viral for all the naysayers/haters and general ‘Debbie downers’ out there whining about this! Thank you for reminding us there are real people who will benefit from all this “nonsense”!!

August 19, 2014 - 8:43 am

Lois - I never knew what ALS was until my cousin Carol got the disease, it started in her feet and worked its way up through her body. She passed on my husbands birthday in 2009. The following year, my grandson noticed twitching in my husbands arms and asked me about it. I took him to the VA doctors and was told he needed to drink water, then eat banana’s he was low on potassium, but it kept getting worse. His speech began to get slurred, his hand was becoming deformed. Finally I demanded they schedule an apptmt with a neurologist, after much testing they found he had ALS. So he could walk until the last couple of weeks, but he had a feeding tube, could not talk, eat, and was falling if he got up without someone close by. It is a horrible, horrible disease. We need much research and if an ice water challenge is what it takes to get the awareness out there, then go for it.

August 19, 2014 - 8:44 am

Judy - I had a cousin die last year with ALS and it is the most in humane disease that one can experience. To be aware of all your surrounding and to be in pain besides is a means of torture that should not have to be experienced by any human. Our creator never meant for man to experience such a life and very soon he promises at ps.37:10,11,and 29 what kind of life he promises along with rev. 21:4 which tells us pain and death will be done away with forever. May the words from God Jehovah give all who suffer from all diseases comfort and hope for changes in the near future that only God can bring about.

August 19, 2014 - 8:44 am

Jennifer Williams - My only complaint on this blog post is that you should’ve posted the website in which to actually make a donation (or did I miss it). I have participated in the ice bucket challenge and will Google the ALS website to make my donation either way. ; )

August 19, 2014 - 8:47 am

Lynn - I asked friends not to include me in the challenge only because I have seen the results of ALS first hand with my cousin who died at the young age of just 27. I make a large donation annually in my cousin’s name to the ALS foundation in the hopes this disease can eventually be cured. Even before being diagnosed, my cousin was a quiet sort and not one for public displays. It is in his memory and my respect for who he was, that I asked not to be nominated.

Jeff, you are always in our thoughts and you are very much still missed 20 years later.

August 19, 2014 - 8:48 am

Nancy - I watched my sister die from ALS and we did the walks to help raise money for it too, be they stopped doing them in my area. But I think the ice challenge is a good idea because I hope with the money they will find a way to cure ALS. Why not people don’t know much about the disease so just maybe now when they hear about the challenge they will learn something about it. Just like me I have Celiac disease and not a lot of people know anything about it they think it’s a diet. But but it’s not it a change in the way we eat every day.

August 19, 2014 - 8:54 am

Emily - Thank you for this beautifully written take on the ice bucket challenge. I found the list of things to do that brings us into the world of a person with ALS. Though I like watching my family and friends dump ice water on their heads, how many of these people are donating money. My husband and I were nominated, however felt it was better to donate money to ALS. We would rather take the challenge of walking in the shoes of an individual with ALS as that raises awareness as well. That is what I would like to see people do. Walk a mile in the shoes versus dumping ice water on our heads. Your family and husband will remain in our prayers!

August 19, 2014 - 8:59 am

Terri Garvey - Thanks so much for you enlightening article. Last night my husband said people were complaining about water being wasted due to the ALS ice bucket challenge. People are always looking for something to complain about. But this has been been an awesome challenge in bring this horrific disease back to light. Until my children were challenged they weren’t aware of ALS, I’m sorry to say. So many are remembering it’s out there and so many are learning about it. I’m happy to see ALS in the light and getting the donations it needs. I hope it continues for your love one and for the unfortunate ones to come.

August 19, 2014 - 9:01 am

Keith Alvis - Well said. Try filling your mouth with peanut butter and move it around to swallow it. I have had A.L.S. for four years and still get around with a walker. I drink all of my calories.

August 19, 2014 - 9:03 am

Cam Sutton - My dad died of ALS a little over a year ago. What a horrific disease. I think I’m speaking for my whole family in saying that I too am grateful that people are bring ALS to awareness. Thanks you for your article.

Cam Sutton

August 19, 2014 - 9:06 am

Izzy - What do you think of this point of view on the Ice Bucket Challenge? Similar to some of the critics, but they do acknowledge the good it has done:

http://almost.thedoctorschannel.com/spreading-awareness-or-avoiding-charity-the-als-ice-bucket-challenge/

More importantly, thank you for sharing your experience with ALS. It’s nice to put another story/face behind the disease, rather than just associating it with the viral videos.

August 19, 2014 - 9:08 am

Pat Bunjes - Thank you for writing this. I know how hard it must have been for you to be so open and honest. We had a friend who suffered from ALS and family who suffer from Parkinson’s Disease. Until people are in this type of situation they really are immune to understanding how the victim of a condition like ALS feels, and how his/her family is effected. This being America, the best way to get attention is to do something that is either outrageous or entertaining. That is the way it is. If people don’t like that – tough. ALS and PD are only two of the ‘invisible’ diseases Americans would like to not think about. We can’t let any of these stay invisible anymore. Again… thank you for your honesty and forthrightness. May God Bless you and your family.

August 19, 2014 - 9:10 am

Adena Hickman - I said to my husband this morning… what’s the point in being called out for the ALS ice bucket challenge when I don’t understand it’s purpose… thank you for such an insightful article that has completed it’s purpose… explaining the purpose of what the challenge is and raising awareness. I am happy to participate and share if more funds are raised. I am a firm believer in supporting good causes, especially after losing my father to cancer. Thank you!!!

August 19, 2014 - 9:15 am

Regina - I too am a witness to the daily struggles of a husband living with ALS. How about tying your fingers together and try to button your shirt? or Pull up your zipper. Put 25# pound weights on your forearms and comb your hair, put a hat on, hug a child. What about only eating things that are mushy and bland, or trying to drink something only to have it come out your nose. Try going to a gathering of friends and relatives, first pack the oxygen, then the suction machine, then have some put your shoes and socks on, help you down the steps and into the car to travel to the gathering where you sit for hours with little conversation because nobody can understand you. Or this is how my hubby gets dressed, try this one; he backs up to the bathroom cabinet and steadies himself, after several attempts he manages to get one foot into the pants and several more attempts he get the other foot in, now he struggles to pull the pants up a little at a time on each side, finally they are up enough that he backs up and slouches down so the knob on the drawer catches his pants, then he stands up with the pants coming up also. And he looks at you with triumph in his eyes, because he can still partially dress himself! Or how about having to have someone tie a string on the pull cords of lights because you can’t raise your arms high enough to reach it anymore. I could go on forever but I will leave you with this. How about being 6ft. tall and weighing 158# and working in road construction for a living and in a matter of months being 5’7 and 98# and not being able to lift a newborn baby!

August 19, 2014 - 9:20 am

Leanne - Good words, good heart, good message. GOOD.

August 19, 2014 - 9:21 am

mark sanchez - I want to say congratulations to the people that have donated and have participated in the ice bucket challenge but I don’t think that there is anything wrong with the ice bucket challenge? My sister has rett syndrome which is a completely different disease and we have yet to start a buzz in the foundation like this one. I understand it is very hard to live with ALS and there is no way that some of us could understand what people with ALS go thru but i think this is a positive thing that went viral and yes it can be a bit over the top, buuut its fun and people are getting involved. My recommendation tho is to do the challenge over some plants that way you are watering them after the challenge is over lol. Good Day Folks! :)

August 19, 2014 - 9:23 am

Opinion: The Ice Bucket Challenge is Not “Slacktivism” | The Centipede - […] don’t understand the nature of marketing. Any advertiser or politician – or, say, the families of ALS sufferers – can tell you that there is nothing more valuable than social pressure and free […]

August 19, 2014 - 9:26 am

Jeff Levinson - Very well written article, albeit there’s a tinge of understandable bitterness. Bitterness carries it’s own set of hellish problems…
I understand that ALS is genetic, and runs in families. It is not in my family, and I do not fear getting the disease. Yet compassion, even basic human compassion, makes me realize that we are all in this together, and only coldness of heart makes us not care.
The substance of life, communication being one of them, must be achieved for ALS victims. If an ALS victim can communicate, with thoughts written down or recorded, a world of expression is opened up to them. Steven Hawking is a prime example, even if I heartily disagree with his conclusions. Can such be done for ALS victims?

August 19, 2014 - 9:27 am

Lynn Blount Cole - My sister had ALS. We lost her in 2009. It is a brutal disease. We need more awareness and info out there. And I also do the ALS WALKS in Atlanta every year for Team Carole.

August 19, 2014 - 9:28 am

Stacy - I believe as life has it’s ups and downs as humans we stop to relize that we can always give back somewhere, to something, or to someone. I give your family my deepest prayers and hope the struggle to find a cure never dies.

August 19, 2014 - 9:29 am

Eunhyuk and Donghae Accepts ALS "Ice Bucket Challenge" - […] In today’s world, people with ALS are suffering in silence and research to cure them is slow, if not non-existent. As long as awareness is raised, these patients will not have to suffer in silence. For more information about what families with family member suffering from ALS think, you can go to this excellent blog. […]

August 19, 2014 - 9:34 am

Carol Buck - I think it is fantastic that the awareness for ALS is being raised in such a huge way by something as simple as getting doused with ice water! I have to say that in the 40 years I lived in SE Nebraska I never heard of a single person having ALS. I moved to NW Kansas and it is like an epidemic here! I don’t understand that at all but maybe someone can enlighten me as to why it is so prevalent here.

That being said – I cannot even imagine enduring the things that Bo lists. Someone that is as claustrophobic as I am, I cannot even begin to explain how terrifying it would be to be physically unable to move at all.

I sincerely hope that this “Facebook Fad” raises money and awareness and helps encourage the research for a cure!

August 19, 2014 - 9:36 am

Cristina Ortiz - I pray for each and every ALS person suffering and the families helping to keep things together! May every continue to fight and be heard to find a cure! Do not be silent. I love your message. Thank you for sharing. God bless always.

August 19, 2014 - 9:40 am

Cindy - I was caregiver to my mom, who had ALS. My wish is that people donate money as well as dump water on their heads as the challenge is to do one or the other. I think the only way people are learning about the disease is to hear the news reports being that the campaign is so successful… I don’t think people are searching out our on their own. In fact, my niece was challenged by her friend. I asked if she would rather just donate and if her friend knew about ALS. Her answer: no, I want to do the video. It’s such a horrible disease. I wish information, like you wrote, would be attached to the challenge so people could understand why this is so important.

August 19, 2014 - 9:41 am

Jim Larsen, D.C., L.M.T. - Hi Bo, Hits home as my wife passed on three years ago with ALS symptoms and same type deterioration. Years back I took care of ALS patients from the onset or beginning of diagnosis. Read my book “Stem Cells and Spinal Trauma” I published one year ago. Trauma to the head or spine may force out stem cells that flow into spinal fluids and end up in brain tissue. One patient had previous fell back and struck the back of her skull years before her ALS. Stem cells are also housed in the skull bones. I have taken care of over 400 patients who had spinal compression fractures and ended up with a variety of cancers and auto immune diseases. I first reported that our own stem cells cause cancer in 1985, 18 years before cancer researchers announced it was so. Even slight injuries years before can lead to tissue changes far from the sight of injury if stem cells migrate out before developing into a cell.

August 19, 2014 - 9:41 am

How the ALS Ice Bucket Challenge is making a HUGE difference | Paynter & Company - […] came across this very enlightening article from Bo Stern. She is both a wife to a man she loves that suffers from ALS and the author of many […]

August 19, 2014 - 9:48 am

Kristine McGuire - Thank you for speaking out. It never ceases to amaze me what people will choose to kevetch over. Raising money for a serious (and misunderstood) illness ranks high in what people should rally behind.

August 19, 2014 - 9:50 am

Brian Rush - I have had family members and close friends die of ALS. I have seen first hand the effects of the disease. Most people prior to the Ice Bucket Challenge didn’t even know about the disease. So if the Ice Bucket Challenge at the end of the media frenzy compiles another couple million to the cause and further research, job well done.

August 19, 2014 - 9:55 am

Jean - Thank you for posting this. My sister was diagnosed with ALS in September of 2012. The doctors thought according to her symptoms she probably had already had it for two years. After fighting a courageous fight with all the grace in the world and faith in God, my sister passed away from this awful disease in May of this year. I watched as she became unable to talk, eat, and walk. So thank you all for raising your buckets of ice to bring awareness of this disease and money to help find a cure. My sister was the most amazing person, she was my best friend, and I miss her more than words can say.

August 19, 2014 - 9:59 am

Grazia Ugliarolo - Thank You so much for sharing your story! I think this is a wonderful thing we are doing together has a country. To see our children, our neighbors, our favorite sports team, movie and TV stars, country, pop, rock, rap musicians and our government leader all joining in together in support of a cause that two weeks ago I never thought about accept when I would catch a re-run of Pride of the Yankees. I’m very sorry for that. When has this group of people I just listed ever done somethings like this together! It’s nice to see that we can all stop for a moment and ban together and share a laugh and a smile! I hope all people suffering with ALS finally feel they aren’t alone. You have an entire country behind you. Awareness, Love, Support, Unity and Funds!!!!!!! To whoever was behind this wonderful concept THANK YOU!!!! To all the haters….Shame on you!!!!
All the best to all! Health and happiness!!!

August 19, 2014 - 10:05 am

Kim - It seems the challenge is raising awareness AND money :)
http://online.wsj.com/articles/charities-seek-their-own-ice-bucket-1408407006

August 19, 2014 - 10:06 am

Carol Fragale Brill - Thank you do much for sharing a bit of your husband’s
and your own journey. The challenge is wonderful. Just thinking about
Sitting or laying still makes me want to jump
Out of my skin. Really great post
Best
Carol

August 19, 2014 - 10:08 am

Kelly Price - You dump water with ice in it on your head. You send a donation. You challenge your friends. And… $10 at a time, we work toward a win. $10 from one person is not much, but fifteen million dollars from this cute viral challenge… that’s real.

August 19, 2014 - 10:11 am

Annette Bianco - My mother had ALS and we lost her four years ago., she had so much strength and courage and she fought this diease real hard to the end. She was a brave women. My sisters and I took care of her at home. it is a very differently for us to watch my mother go though this. My sisters and I always do a walk for ALS in memory of my mom and raise money for a cure. I’m very happy to see how many people did the ice challenge and the money that was raise from ALS. No one should have to go though this diease and I hope we can find a cure. thank you for posted this article.

August 19, 2014 - 10:11 am

Cheryl Traber - My sister died from ALS in 2001. She was only 49 years old. The family watched as she literally became a prisoner in her own body. ALS is one of the most horrible diseases there are as for as I’m concerned. Watching the Ice Bucket Challenges have warmed my heart. And anybody that thinks different certainly hasn’t gone this route with a loved one. I have donated, walked, telethons, poker tournaments etc… Anything I can do to try and help the cause. The more it gets out there…the better. Thanks again to everyone that has participated in this cause.

August 19, 2014 - 10:16 am

angie - thank you!
while, thankfully, nobody in my family has ALS, my father has been living for three years with myelofibrosis – which is a rare, and terminal bone marrow cancer. while i appreciate seeing everybody donating to such a great cause like ALS, people should donate to different charities ALL the time because they want to, not because of some stupid challenge.

August 19, 2014 - 10:17 am

Nancy - Teresa, It is that way with any disease that is rare, The money just doesn’t get to them. I have anal cancer and the year I was diagnosed there were only appx 4100 cases in the entire country. The numbers are going up now but it still does not get the attention needed the raise money for research,and to help the people with it. The number of medical personnel who knew about this cancer are few and far between. I had doctors try to correct me saying rectal cancer, No rectal cancer is entirely different. Add to that it is in an area of the body that makes most people uncomfortable to even think about it or talk about. I can’t tell you how many times I’ve had someone ask what kind of cancer I have and it’s amazing how fast the subject matter will change. That area is for jokes not serious discussions about how you are.I understand that the peak of ALS is so bad and even terminal cancer does not compare but still both don’t get the attention or money needed. As a woman I should care about breast cancer and donate, etc but I can’t. It makes me angry when I see all the fund raising for it when the cancer I have is ignored and it can kill me just as easily.

August 19, 2014 - 10:19 am

kendra - Thank you. My father in law lost his battle with ALS in 2000 at the age of 49. Your description of his daily struggle is spot on. I appreciate all this hoopla because I want people to know that ALS is more than just something Lou Gherig died from. Families are in pain and suffering but that is nothing compared to what those battling it go through.

August 19, 2014 - 10:21 am

OnGreenBay – Why I did the ALS Ice Bucket Challenge - […] Then, you can see how joyous those people are, how important the money really is, and how greatly you impacted everyone involved. […]

August 19, 2014 - 10:23 am

Kim Benner - I copied and pasted (giving your site full credit) the info about living 1 day in an ALS person’s shoes. I am hoping that those that don’t read the whole article will at least read my post and will spread awareness.

August 19, 2014 - 10:26 am

JudyB - What a great idea this challenge is. My uncle died of this disease 24 years ago…and I’m sorry to say that I had no idea what it was then…and I’m not much more educated about it today. Or should I say yesterday? I have seen all the videos (lots of my cousins and friends!) who have taken the ice bucket challenge…and bless them all for helping to come up with the funds to help find a cure for this disease, which has also been explained in some of these videos…by victims of ALS. I can only guess that everyone complaining is jealous that they didn’t think of it first. May these dollars and the awareness raised be the magic bullet that is needed.

August 19, 2014 - 10:27 am

Katrina Bayer - No one is posting how and where to donate. Can you give some insight?

August 19, 2014 - 10:27 am

OnMadison.com – Why I did the ALS Ice Bucket Challenge - […] Then, you can see how joyous those people are, how important the money really is, and how greatly you impacted everyone involved. […]

August 19, 2014 - 10:31 am

Why I did the ALS Ice Bucket Challenge | The In Click - […] Then, you can see how joyous those people are, how important the money really is, and how greatly you impacted everyone involved. […]

August 19, 2014 - 10:33 am

Ilene - I’ve done hospice/homecare for over 20 yrs. ALS is one of the diseases that breaks my heart and makes me angry. I understand it is one of the diseases that are underfunded. My daughter has CVID and they have no funding. This disease strikes the young, from babies to young adults. That this disease attackes the immune system, which a simple cold they could die from. My daughter who has CVID is walk for ALS fund raisers in her area. She will also be walking for CVID to raise funds for CVID in Philadelphia. Her’s is CVID WALK in Philadelphia on September 28th. You can find it online donate for CVID. She has aready collected $250 on her first day for ALS and has 2 weeks to go for the walk. She’s walking for her boyfriend’s father, who is coming to the end.

August 19, 2014 - 10:33 am

Brittani - I never knew what ALS was, I do know when the Ice Bucket Challenge came to my attention I thought it was some joke. Then I started doing a bit of personal research. I found that ALS is no joke but a very serious disease. I am so sorry that you have to watch your husband go through something so terrible. I couldnt imagine having to be as strong as you are. But thank you for the little bit of insight on ALS. I will definatly look at it a little differently.

However I do enjoy watching so many people get so into this!

August 19, 2014 - 10:35 am

Becky Shaw - I know first hand what it is like to live with someone who has ALS, I lost my grandfather 18 years ago from this awful disease.
I took part in this challenge and donate on a regular basis.

I just wish people would look at this challenge in a different light rather then being so cynical about it.

Thank you for this post!!

August 19, 2014 - 10:36 am

bo - Yes! You can donate at http://www.alsa.org/donate

August 19, 2014 - 10:37 am

Incredulous - People are sometimes afraid of feeling. When they do feel something they swat it away in anger and annoyance. The ugliness we see in the form of sarcastic, unsupportive, grumpy, rude uncompassionate and downright mean comments are people’s way of trying to pretend that that things don’t exist or if they are nasty to them they will disappear and leave them alone. It is their reactionary response to the fear within, but in truth they can’t scare away the monsters of the world by being scarier than them.

There are so many more monsters lurking, and they are more than prevalent than anyone wants to admit. Many illnesses are fatal, many are untreatable, many are chronic with very similar symptoms except they last for the rest of a person’s very long life as they continue to suffer without the assistance of understanding loved ones or caring physicians and certainly no more funding for research than any other dreadful disease.

You are absolutely correct in that most people are completely unaware of any or all of the things which other people go through on a regular basis and why they are truly super humans in their own right. I truly wish that there were ways to shine a spotlight into so many different corners of the world and share the plight of so many incredible people who continue to struggle. And I wish that those who groan without a shred of sympathy, or an ounce of empathy were able to understand just how far out of touch they are with their own humanity.

August 19, 2014 - 10:39 am

Stop Complaining about the Ice Bucket Challenge - […] aware, I want to know more so that I can understand and empathize with those living with ALS. Here is an excellent post about what it’s like to live with this horrible disease … it will make you think. For […]

August 19, 2014 - 10:42 am

why you should love the ice bucket challenge | Oneicity - […] that came through my Facebook feed in the space of about 45 minutes last night, was this post of “What An ALS Family Really Thinks About The Ice Bucket Challenge.” The author’s husband has ALS. She knows the day-to-day life of ALS. She calls it the “fight of […]

August 19, 2014 - 10:45 am

Liz - Thank you for this I’m glad you all enjoy it I just did the video and I was going to be so sad that I did if I heard someone that lives with ALS in their lives didn’t like it. My thoughts go out to you

August 19, 2014 - 10:46 am

Jeremy Jamnick - ALS Association or ALS of Michigan is our main two organizations..

August 19, 2014 - 10:51 am

Patricia - I am so thankful for the challenge. So many people are unaware.Im an RN Case Manager and I spend my days helping people live the best and healthiest lives poissible while managingn this disease. Meanwhile I struggle with increasing muscle weakness and polymyalgias that my own doctors cannot explain. ALS is something they never dare speak of. My tests are always indefinitive. I know of patientsn with slowly progresive ALS which is good in that their functioning is affected moire slowly but difficult and frustrating because at first they don’t appear sick and can be musunderstood as lazy or “faking it” to those unaware. As I sit here typing it is exhausting to use my neck and arms to type…i have pain, I am weaak…but I look fine. Just holding my head up right at times feels like a workout. My children joke that I canno longer open things sealednin plastic or remove lids from jars,or take heavy pans off the stove or out of the oven. My own neurologist (and the two before him) don’t believe I am this affectd and refuse to do more testing as I don’tnfitnthe right pattern for ALS. Maybe its something different but the fact that no one is willing to consider it I find troubling. People with ALS need prompt diagnosis and intervention and time is not a luxury for those with ALS there is no time to wait and see or do it tomorrow.

August 19, 2014 - 10:53 am

J Molnar - What does it matter if you dump water on ur self or walk the best thing to do to help a cause is the way you perfer. I sounds like a terrible diease and I am sorry they have to go thru this but if i were to walk or dump water it is me and it me giving to to the cause.

August 19, 2014 - 10:58 am

Cheryl - Bo, thank you so much for your thoughtful, restrained rebuttal to those who are too impatient to let this worthy viral trend run its course.

I watched my mother die from ALS over the course of 3 years. It wasn’t bad enough for her to have ALS, but Bulbar ALS, (in my opinion the worst kind of ALS), where the loss of muscle control starts with the tongue. It sounds like your husband may be afflicted with this form as well.

Within 6 months she could no longer speak and within one year, she could no longer eat, and during this time, she was becoming weaker and weaker in the rest of her body.

I am simply amazed by the donations that are pouring into ALSA because of the Ice Bucket Challenge, but I believe the awareness gained for this horrifying disease is the most important outcome. More people will know about this disease and that awareness will hopefully be the first step in a journey to find a cure. God Bless you, your husband and your family as you live with this disease.

August 19, 2014 - 10:58 am

Karen Riley - I lost my mother to ALS 20 years ago at age 60. My mother participated in some clinical trials and we were hoping for a cure or a drug that could stop the progression of the disease 20 years ago. Still no drug or cure to help people living this nightmare. More money is needed to help find a cure and this ice bucket challenge is really doing a great job for people to donate and be aware of this disease and people who are living with it. Prayers to your family and just take each day as it comes and don’t get overwhelmed. Ask for help when you need it. God bless you.

August 19, 2014 - 11:02 am

A Quick Rant: ALS Ice Bucket Challenge | Revelations of Miss Obvious - […] In the process of watching these hilarious (did you see that girl who the whole bucket fell on?!) videos of countless people experiencing the shock of ice water, I’ve learned about ALS. I’ve read blogs, heard radio reports, and felt empathy for the people of this world who find they have ALS. The more you read the more that ALS sounds like being locked up in jail, confined to your own body. I highly suggest catching up with this blog if you want some more information. […]

August 19, 2014 - 11:06 am

Terry - It’s my understanding that people are pouring the water on their heads so they DON’T have to donate. I’m thinking this has been a dismal way to raise money albeit a great way tip raise awareness. Bless you.

August 19, 2014 - 11:07 am

Erin - Wonderful article! My grandmother passed from ALS twenty years ago, and although I was young, I remember how devastating it was. Towards the end, she could only use her eyes to communicate. One blink for ‘no’ and two blinks for ‘yes.’ I remember she had this big plastic board with letters on it. She would move her eyes in the direction of each letter one at a time to spell out words. It took ten minutes for her to tell her grand kids she loved them! I think people can ‘suffer’ through these videos clogging up their newsfeed for a while in order to fund a good cause. Thank you for sharing, and best of luck to you and your husband!

August 19, 2014 - 11:08 am

Tricia - Thank you for this. I lost my grandmother to ALS in 1992 and then my mother was diagnosed in 2002 and passed New Years Day 2004. I am so very thankful for the ice bucket challenge and the awareness it is bringing to ALS. God bless you and your husband as you fight the hard fight.

August 19, 2014 - 11:16 am

Geoffrey - I appreciate you sharing your experiences and thoughts about ALS. While I agree that raising awareness and funding research to combat ALS is highly important, I wish there were a more responsible way to do it than for people to dump water on the ground. Clean water is a commodity that we take for granted, and pouring it out (in the recognition of a very valid cause) looks foolish on the world stage.

August 19, 2014 - 11:20 am

Scruffy - I didn’t do the challenge but it did make me aware enough to make a donation! And, I give everyone credit that did it. I live in 24/7 pain so because I can’t physically participate I sure as hell can type my CC #’s in a box & know that this is going to ease someone’s suffering, help fund research & provide support for the caregivers. I have a cat & don’t need to see any more videos! Anyone that gripes over anything that raises awareness, funds & compassion is OK in my book. Thanks for sharing your story xoxo

August 19, 2014 - 11:25 am

Bill Nickerson - When completing the Ice Bucket Challenged for ALS, I included by kids as we do for any special causes that we believe in. This was something near and dear to our family. I think it is wonderful the amount of people got involved, and yes, some don’t get it and don’t understand it. Thats the way it is with many types of charities, people just want to get on the bandwagon. Well, if it was able to raise Millions of dollars for ALS…then by all means grab your ice buckets and pour away!! I ride the Pan Mass Challenge every year, my daughters have a lemondade stand and raise money for me, I want them to understand how fortunate we are and what ever we can do to help others, we will do!! This was a great idea that went really viral, raised a lot of money!

August 19, 2014 - 11:28 am

Amanda Williams - I like the ice bucket challenge even if not everyone that is participating understands completely about als. at least its getting the message out there that it’s here and raising awareness that it actually exist. even if someone Googles it for 10 minutes it’s better than them not knowing anything about it at all. one thing I’ve learn to live with after my dad was diagnosed is that almost nobody knows what it is really like living with it unless they have it or are taking care of someone that has it. The most horribly unbearable thing I have experience of all is seeing the faces of the people and the families that are just diagnosed when they realize exactly what’s going to happen. Maybe they have never heard of it before.. Maybe they knew a famous baseball player had it. But when they meet someone with it our they attend a clinic for the first time and they’re in a room full of people that have it and they see their future and then they realize… that for me is the worst moment ever. So I’m happy that this challenge is going on and that even though someone may not know really what it is. At least they’ve heard of it and the more people that hear about it the more people are willing to donate 5, 10, 100, or $1000 to fund research and help find a cure. To me not everybody has to know exactly what its like they just need to be willing to help. <3

August 19, 2014 - 11:31 am

Lisa Dekle - Thank you for your blog. My mom was a vibrant, strong, loving, funny woman who died from ALS in 1998. We were devastated to get this diagnosis and it was heartbreaking to watch her suffer from this horrid disease! If by dumping ice on your head helps raise awareness and increase donations then do it! I pray for a cure so that no one else suffers as my mom did.

August 19, 2014 - 11:32 am

Allen Young - Teresa That is such a great article. A friend from high tagged me. I am a 52yr old male with ALS. I was diagnosed in 2012.Since then I have lost all mobility in my legs and spend most of my life in a wheelchair, the rest in bed. I am now loosing strength in my arms and fine motor functions in my hands. Thank God it hasn’t spread to my voice chewing or breathing. I also am married 30yrs to beautiful wife and a wonderful caretaker. I have an 12 year old son that just started the 7th grade. To all the people that have been critical of the Ice Bucket Challenge I say this. I don’t care if Bill Gates sells a few more Windows programs for this. I don’t care if Charlie Sheen get another movie offer, as long as they make a donation to this nasty disease who cares. The point is there has been more money for ALS research in history. And the awareness is awesome. If you don’t mind I have a few things to add to your list.

1. Try waking your wife at night to get you a urinal.
2. Try letting your son help you get dressed or help you to the toilet. Humiliation to say the least.
3.Try lying on the floor and letting someone try to pick you up and put you in a chair without you assisting them at all.
4 Let a member of your family cut your steak for you the next time you go out to eat and watch the people look at you until you look at them then they drop their head.
5 Put a weight on your arm and try throwing a football to someone.
I just wanted to add a few things that I face daily and I pray that some of this money will at least find a treatment or cure. Not just for me but the 1000′s of people in my shoes.

August 19, 2014 - 11:33 am

sylvia - Thank you for sharing your perspective and your stories. I am so sorry this has happened to you and to your husband. I am so glad you are able to speak so articulately for your husband and for other ALS sufferers.

May God give you strength to continue to be both so compassionate AND outspoken

August 19, 2014 - 11:33 am

Lorraine - I watched my brother-in-law sufferand in just about a year he lost hhis life what a horrible disease

August 19, 2014 - 11:34 am

Katie Stocker - Thank you, thank you, thank you. This helps educate the people who are so ignorant to say it’s wasting water to not see the big picture. This really helps, and I will share it on my facebook.

August 19, 2014 - 11:37 am

Lorie Gomes - Amazing article and the perspective from someone facing this insidious disease is something we don’t often hear. We watched my Grandmother die from this horrible disease and I say anyway that money can be raised for research is awesome. And for anyone that hasn’t dealt with the disease first hand, you will never know how horribly devastating it is for the person suffering and the caregivers that have to watch their loved ones die in such a torturous way. Their minds remain strong and vital, but their bodies degenerate day by day until they can no longer function. Prayers to all those affected by ALS.

August 19, 2014 - 11:39 am

SusanMcNerney - I certainly know and understand first hard of the ugliness of ALS it claimed the life of my father at the age of 69 it was the hardest thing I’ve ever had to do in my life

August 19, 2014 - 11:39 am

Michele Sauter - Thank you very much for sharing your story. I too have first hand experience about ALS. Our story went something like this. First trying to get the correct diagnosis, which seemed like forever. Secondly,the endless research that my family did prior and after his diagnosis because we didn’t know much if anything about this disease, and finally to be granted only 4 short months after his diagnosis, we lost my Dad to this horrible monster. I think it is brilliant to have a challenge to raise Awareness and hopefully funds for research & patient care. I look forward to video(ing) my own Facebook Ice Bucket Challenge as well as donating to this worthy cause. I hope my friends and family do the same. You can bet I will be sharing your blog as you hit the nail on the head with your 10 points of “A Mile in ALS Shoes”. Though we didn’t experience all of them, we hit many of them. Best wishes to you, your husband and your family. For those that find this challenge and the social media annoying. Go back and read the 10 points again or simply don’t check your news feed. Thanks again for an Awesome post!!

August 19, 2014 - 11:39 am

Gayla Norman - My dad has ALS and we see his battles day in and day out and how hard things are and how frustrating he becomes when trying to do them… We have fundraisers up and going trying to help with medical expenses and everyone thinks its a hoaxs ITS NOT… My mother is his caregiver and the obstacles and hurtles that she has to go through to make him comfortable or just ok for the time being is out of this world… My dad watched a video of a woman doing the ice bucket challenge and it has encouraged him to want to do one… So I say if it can inspire someone to want to get out and do this that has ALS then PLEASE let the whole world do it just for the smile on their face or the inspiration in their hearts… I love my dad very much and this is the hardest thing I have ever been through in my life can’t imagine what he god through..

August 19, 2014 - 11:42 am

Barbara Kienzler - The family of Eileen Kienzler thanks you for your insightful post on the Ice Bucket Challenge. We were unfortunate to lose our fantastic mom to this horrific illness and we do what we can to raise awareness of ALS. Each year we do a HUGE garage sale with all proceeds going to the ALS Association. Every person who donates goods to it (After all even the 11 children & 16 grandchildren of Eileen & Ray cannot come up with enough stuff to throw a major sale every year!) helps with it or shops at the sale goes away with a little more understanding of the disease. And I laugh every year when I think how Mom would shake her head if she were watching us sweat & squabble & share. Thanks to all the Ice People for providing some help & fun to all the families

August 19, 2014 - 11:51 am

DiAnn - My Dear Husband died 2005 of ALS. No one know the heartache. to see them go through the stages of ALS. The Family did the ice bucket challeng. Praying for A cure. With Loving Memory. Love you DiAnn.

August 19, 2014 - 11:53 am

Stephanie - I believe the ice bucket challenge is making people more aware of this terrible disease. Many people have never heard of it but like you said everybody knows it as the Lou Gehrig disease. I sit and watched for years as it slowly killed my mother. These people need to take the money that bucket of ice cost and donate to the ALS Association or take the place of a care giver for a day!

August 19, 2014 - 11:56 am

charmaine - This article was great ! Keep the buckets going and raise more money

August 19, 2014 - 11:57 am

cecily terrell - I love this. My husband who is 25 was just recently diagnosed with ALS and nobody knows what is is nor do they know its serious. I am so glad that this ice bucket challange is going around to raise to help find a cure for this terrible disease..

August 19, 2014 - 11:58 am

Ron Kendrick - As an ALS patient, let me say “well done”!….very well written. If I may, let me add a few more things. Ever had. Sn eye twitch? Imagine that all over your body and it just keeps going on and on…kinda feels like you are shivering all over. Then there are the muscle cramps……excruciating. Then there is the swelling in the feet…..feels like a baloon filled with water. Not to sound like a drama person…..but all of these and the ones described above can occur at the same time. To all of you, thanks for caring and for trying to empathize. God bless!

August 19, 2014 - 12:01 pm

Nancy Weber - Your perspective on life shows us strength and courage. Seeing someone you love suffer from this monster is not easy. I too am complete awe watching the Ice Bucket Challenges because it’s fun and all the smiles. Can you agree – there isn’t one person that either completes the Ice Bucket Challenge or video’s it that doesn’t smile or laugh at the end? And to think it was started by 1 person and it’s gone viral. Amazing. My mother died of ALS. She was a caring, beautiful person with a warm sense of humor and taught me how to enjoy life. So I wanted to share 2 ideas that would help move into an ALS patients life. The first, listen to your favorite song – you know the one that makes you dance when no one is looking and sit there and not move one muscle. Don’t tap your foot or snap your fingers. I tried when I was driving my car today – I failed. The second you know how everyone loves going to the dentist? Right? Imagine having to use that drool thing – you know the one that suctions your saliva because you can’t spit when you are all numbed up – everyday just to get rid of the excess saliva because you lost the ability to swallow. We really sometimes take for granted just the basic things in life. God bless.

August 19, 2014 - 12:04 pm

Jen - I appreciate this article more than you know. I have a personal family friend with the disease and the magnitude that a mother of three is going to leave behind. I pray every day that when this amazing woman is gone that I can only be there for her little girls without letting them down. Soldier on! You’re an incredible woman. I can’t wait to go and do the ALS walk in Irvine!

August 19, 2014 - 12:05 pm

Sue - My sister-in-law lost her battle with ALS about 4 years ago. It was horrible watching her go from a healthy 40 something year old to someone who could do nothing for herself. ALS robs a person of everything that healthy people take for granted. Simply swallowing became a chore. Anything that brings attention to this horrific disease, raises money for research, and perhaps hopefully a cure someday is okay in my books.

August 19, 2014 - 12:07 pm

Debbie Bishop - We are so fortunate to live in the United States compared to so many countries, I cannot fathom people are complaining about the ALS challenges. What an opportunity to learn and raise awareness. Those that do not wish to participate do not have to. There are so many disgusting, nasty posts these days, I find it heart warming and important to have positive posts about something that affects so many of our neighbors, friends, and families.

Please ignore the ignorance of some. They will always be out there and would rather view distasteful Somee cards or unpleasant jokes than increase their education and have empathy on their fellow human kind. I pray for them, that they will never endure a disease such as ALS or anything else or any of their friends or family.

Best wishes to you and your family and blessings!

August 19, 2014 - 12:13 pm

Jill - I have ALS and am moved by this article. I will definately start sharing my story as well . Thank you

August 19, 2014 - 12:13 pm

Darryll Devine - Having just lost my brother to ALS I can understand why it is a vague disease until someone you know is stricken with it. In May of 2013 my brother was participating in bicycle marathons, 14 months later after a valiant struggle he was gone. Though his mind remained sharp, his sense of humor remained intact to the very end; gradually his muscles failed him. Simple things like getting a gallon of milk from the refrigerator were no longer physically possible. The ability to eat on his own or walk even with a walker. As he called it, it was living being just a living brain. His wife remained his strength and caregiver until the end. It is a disease few understand, one that has no cure and until now has not been in the fore front of any significant fund raisers for awareness or a cure. For those who say the Ice Bucket Challenge has run its course or is being way too hyped..I merely say, be grateful this disease has not touched anyone you love, because if it had, your eyes would well up with tears seeing all those who are taking the challenge…and wishing my brother had lived to see it.

August 19, 2014 - 12:14 pm

Roz rakoff - My husband Stuart, age 69, died of ALS in January, 2014. He was diagnosed in September, 2012. A Mile in ALS Shoes is poignant.
Please see Stuart’s blog for more insight into his experience. Stuart faced this disease with amazing dignity, courage, humor and grace.
stuspeaks.wordpress.com

August 19, 2014 - 12:17 pm

Kellie Smutek - What a great read! I sit and look at the people that are so offended by this “Ice Bucket Challenge” and they are probably the ones that do not donate, get involved in nothing and do nothing but complain all day!!! Since this Challenge I have read more on ALS than I ever have in my life and so has other people in my family. Is it so wrong to bring a country together with something so un-violent and un-controversial that someone has to have a problem with it? It saddens me when something so good in the world is coming around and there is these scum bags trying to ruin it. There are people suffering from this disease and people around the world big and small are bringing awareness and if they want to dump a bucket of ice water on their head so be it they are not hurting anybody and it is for a good cause, bringing America together, and for once educating people on a disease that is so silent out there. I say leave the people alone that are happy with themselves and are trying to help other people and people out there that are miserable with themselves find some help out there and get right with yourself.

August 19, 2014 - 12:19 pm

Lori - I had a very good friend who I had lost track of until our recent high school reunion, & his name was under the Memorial Listings. You could of knocked me over with a feather!! Don was a Jock all through grade school & high school, was on the Honor Roll, was voted Prom King I think 2 or more times & was very popular. I really struggled with his loss because he was the first person to ever die from my high school & I had the biggest crush on him(the feelings were not mutual!) I had my husband try & find his obituary because being only 55, I wanted to know how he passed. Once we found it, I read at the bottom, in lieu of flowers please donate to the ALS Foundation. Since then, I have been trying to find out more info about ALS & what it actually does to a person’s body & until your letter, I have been unsuccessful. I can’t tell you how much I appreciate the way you have described what your Husband actually has to endure on a daily basis & what You & Your Children go through day to day,it’s unimaginable!! Thank you for enlightening me & I will be praying for Your Family daily! Is there a website that I could learn more about ALS?

August 19, 2014 - 12:28 pm

Kendra - This article moved me to tears and I have cried all day. Thank you, thank you from the bottom of my heart for this. My maternal grandmother AND my father both had Bulbar ALS. When Granny was diagnosed in 1978, there was so little research being done, that doctors did nothing for her. Tragically, she choked to death on her lunch. In 2000, when my father received The News, so much more help was available, yet he still lived only 18 months post-diagnosis. I agree with you; anything that raises awareness is a good thing! God bless you and your family.

August 19, 2014 - 12:28 pm

mike - Amyotrophic lateral sclerosis.
You groaned about a doctor not knowing what it is, how about we start by letting others what it stands for, which you failed to do in your article.

August 19, 2014 - 12:32 pm

carmen - whether or not people donate, the awareness fostered by this campaign is a much needed boost, as ALS is not one of the more renowned causes the masses support. on a personal note, i must say that it has given me an overwhelming feeling of solidarity…for though ALS leaves one completely physically dependent on others, it also, ironically, makes you feel entirely alone.

Since being diagnosed with Amyotrophic Lateral Sclerosis, I’ve lost much, including the ability to physically function in ways required for independent daily living, the physical ability to care for my infant daughter, the freedom and convenience that driving a car allows, employment prospects and income potential, and unencumbered speech; in short – my health, my marriage, my home, my job, my appearance, my friends, and last but not least… the one remaining saving grace ~ my psyche – has ultimately been plundered as well with the inexplicable actions of an utter stranger who entered my sanctuary of hearth and home with ill intent, violating a sense of security in me, thereby forever altering my peace of mind.

let’s not forget theft of our possessions by caregivers who aren’t trustworthy or dependable enough not to strand us. even a majority of the medical community writes ALS off as a lost cause. in my experience hospital staff doesn’t know what to do with me, and the level of care is thus inadequate.

Through it all, I, and countless others like me, maintain a positive spirit that refuses to be restrained by the confines of this illness. the awareness promoted by the ice bucket challenge liberates us from obscurity.

August 19, 2014 - 12:32 pm

Lisa - Thanks for the perspective. I’m one of those who didn’t like the ice bucket “gimmick”: it seemed self-indulgent, and I found the idea of posting a silly video in place of making a charitable donation, which is how the challenge was originally presented, rather offensive. However, if it brings funding to an underfunded and not well-known disease, who am I to complain?

That said, your list of Empathetic Experiences would have made a more relevant awareness campaign. Ask people to try one or more of these (no video required) and then donate.

August 19, 2014 - 12:36 pm

eric crouse - The naysayers have probably never lost anyone to this disease. I’ve lost one and will lose two more. I absolutely refuse to refer to it as Lou Gehrigs, also known as ALS. It IS ALS!

August 19, 2014 - 12:38 pm

Susan Ericson - I love the challenge and I enjoy watching my friends
and family douse themselves.
This challenge has raised so much awareness and
money in such a short.
Thank you for sharing your story, my prayers
are with you and your family as you fight the
battle.

August 19, 2014 - 12:40 pm

Anita McCombs - I do know personally someone who is suffering with ALS, and I feel so Blessed and humbled by the families support and acceptance, of this dreadful unspoken about killer!! I pray daily for her and her family and children and parents,.I do hope this Ice Bucket challenge gets around and around.God Bless all who are dealing with
ALS or involved with their care.

August 19, 2014 - 12:43 pm

Danielle chambers - Last night every person in my house did the ice water challenge. I thought it was a great way to bring awareness for people who had no idea what ALS is. I do want to share that my daughter Hailey, she is 5 and after everyone else finished their challenge she jumps in the pool and said “mommy I wanna support it too” so she called out her 4 names and I poured the bucket over her head. She jumped up and down and giggled. Even if she doesn’t understand what ALS is, she understands we were raising awareness and hope, and she wanted to help. We will continue to raise awareness for all different kinds of things because in our family it’s important. Thank you for sharing your story.
-Danielle (Vancouver wa)

August 19, 2014 - 12:48 pm

Donna Jenson - I lost my youngest son to ALS on April 30, 2011. He was only 31 when he was diagnosed but he beat the odds for 10 1/2 years. We were able to keep him at home with us but the last 4 years of his life he was “entombed” in a body that would not work for him. the ALS Organization was a great help to us. There is also a group called “Voice for Joanie” that helps people get speaking devices at no charge. The lady who founded it devoted her life to this cause and worked with many ALS patients including my son. She lost her life to cancer last year but her legacy lives on and is still helping people. The ice bucket challenge has been a fantastic help in raising awareness and research funds. I am sure both Jerry, my son, and Shirley, “Voice for Joanie” founder are watching from heaven with big smiles on their faces. I pray for a cure every day even though it will be too late for Jerry because it will prevent other families from going through the pain and loss.

August 19, 2014 - 12:49 pm

Alanna - God bless you and your family. I think it’s wonderful to see ALS get the attention it deserves. I hope for a world that one day people like your husband will not have to suffer from this utterly horrible disease.

August 19, 2014 - 12:51 pm

Alanna - God bless you and your family. I think it’s wonderful that ALS is finally getting the attention it deserves. I hope that one day people like your husband will no longer have to suffer from this utterly horrible disease. A cure cannot come soon enough!

August 19, 2014 - 12:51 pm

Pamela Gridley - My mother died of ALS 2 1/2 years ago. I traveled back and forth from Prineville, Oregon to Ord, Nebraska……spending 11 months total away from home…..to help care for my mom. Hers was an unusual form of ALS…..starting with bulbar palsey….but progressed from there and in 28 months…was another statistic. I miss her every single day. I am thrilled that these people are doing this….for any reason. My father was dying of cancer at the same time……and ALS was far worse. My mother lived with dignity, in spite of the fact that her children had to take care of very personal chores for her…..until we needed skilled nursing to take over when we could do it no longer. I am grateful that people are finding out about a terrible disease through this water bucket thingie. I hope one day….no one will have to go through what my mom went through. I know where she is now……she was ready to go there…..my father joined her three short months later…..

August 19, 2014 - 12:51 pm

Mandie Szakelyhidi - My grandfather passed away in 2003 from this disease. It is truly devastating and I will be praying for your husband and your family!

August 19, 2014 - 12:55 pm

kim - I am so happy that the bucket challenge happened and amazed at just how far it has gone, and is still going. To the people criticizing all of the hoop-la. I guess your family has been very fortunate that ALS has not reared its ugly head. The fact is, that unless you have been affected by ALS, you have no idea just what a horrible disease it is. Anything that can bring attention to people about what ALS is and what it does to the human body AND raise money that is so very needed for research is a wonderful thing. ALS takes everything and I do mean EVERYTHING Our family watched our mom suffer through ALS, 18 months from diagnosis till her death. She was a kind, loving and loved Mother, Grand Mother and Great Grand Mother that didn’t deserve it, NO ONE deserves it. It doesn’t effect only the patient but the entire family. Fourteen years later and not a day goes by that I don’t think of what a brave fight my mom put up. I hope that the people that have done the challenge and that people who have watched the 100′s of videos have researched what ALS is, what it does and the need for research. My prayers to any and all families going through ALS. If only prayers could end it. It needs to be researched and if a bucket of water dumped on your head can raise awareness AND the money needed, then so be it. Thanks to all the Bucketeers for making the world more aware of ALS.

August 19, 2014 - 12:58 pm

Pamela Gridley - My mom passed from ALS that started out as bulbar palsey 2 1/2 years ago. I spent many months living with them or traveling back and forth from Oregon to Nebraska….going to the various doctors that made her life a wee bit easier. It was so hard to watch it happen…..the things that I knew she was losing……the last time I knew I was going to hear her speak my name…..eat her wonderful cooking……so many lasts…. I must admit…..seeing all the ice bucket stuff stirs up the grief and loss a bit….but I am glad it is happening. I hope that someday, through the research that this will fund….a treatment or cure will be found for this horrible disease!

August 19, 2014 - 1:00 pm

Us. On the rocks. With a splash. | commonterri - […] hard to be a cynic when you read articles like the one recently published on Forbes or from an ALS family. Or the cold hard numbers of dollars being raised. (And this is assuming that we are only counting […]

August 19, 2014 - 1:13 pm

Diane Berg - Thank you for this post. I just lost my sister to this horrible disease and to hear anyone say the #icebucketchallenge is stupid or a waste of time infuriates me. We need to find a cure for all those who will are and will suffer from Amyotrophic lateral sclerosis

August 19, 2014 - 1:15 pm

Tammy D - My dad was diagnosed with ALS more than 30 years ago. This ice bucket challenge has done the most to raise awareness I have ever seen! In the past 30 years, I don’t think there have been very many strides in finding a cure, a cause, or sympathy! The ice bucket challenge is finally doing what nothing else has!! Bring on the ice! Stay strong, keep the faith! Prayers to you and your family!

August 19, 2014 - 1:24 pm

Melissa - My father died from ALS. It is truly a devastating disease. What was even more horrible about this is that my mother was dianosed 6 days prior to my dad’s diagnosis with breast cancer. I lived 5 hours away but my 18 yr. old son stayed with them and took care of them both. He worked at a grocery store and took care of his grandmother and grandfather when not working. They had ‘home health’ workers that were assigned to my father but not to my mother (they helped her anyway). We tried to get some help from United Way but they said their retirement income was $25 a month too much. Got no help from anyone else. I was teaching in another state so could help when we had long weekends and holidays off. I would let my son go have a bit of fun and relief but had people tell me how bad he was for running off and leaving me alone with them. I also had a 10 yr old daughter who would sit and talk to my dad for hours. My son had a right to go and be a teenager when he had the chance and I never begrudged him that time away. ALS is so bad for everyone connected to the disease and we need people to be aware of the devastation to all involved. We need to be heard. I will be walking with my area in September. I am 60 yrs old. My son is 40, my daughter is 32. My father was 74 when he died and my mother was 69. They died 40 days apart. my mother on 6/30/1993 my father 8/9/1993.

August 19, 2014 - 1:25 pm

Amy - http://als-whaticantellyou.blogspot.com/
This is my husband’s blog about his life with ALS.
It’s not for the timid.
Thank you for sharing and know you are not alone.

August 19, 2014 - 1:30 pm

Val Casavant - Lost my Grandma to ALS. She died in 1986 and at the time I had no idea what this disease was. Horrible doesn’t begin to describe it.
I hope one day soon we can all forget what ALS is.

August 19, 2014 - 1:33 pm

aubri - Thank you for this amazing and eye opening post. While I’ve know people with Lou Gehrig’s disease I’ve never heard of it referred to as ALS. This brings a whole new light to me and opened my eyes and heart. Thank you for being honest and real!

August 19, 2014 - 1:34 pm

Tiffany - I think it is WONDERFUL. . NOW. about two months ago this started in my town, but was just an excuse to NOT pay onto the charity. If you did the ice challenge you didn’t have to pay. … seemed childish to me. Just do the challenge AND donate something. Maybe make it that if you didn’t do the challenge the amount was doubled? But just donate. Now the celebrities ate on the bandwagon and people are donating. When I saw the MANY posts from my hometown, it was funny at best, but I don’t think many people from my hometown donated. Challenge after challenge was accepted so they didn’t have to donate. Thank God the challenge has improved.

August 19, 2014 - 1:35 pm

Pamela García - I shared this information in spanish so that more people can undertand what patient with ALS live every day. I hope that with this little effort I can help more people get to know this desease. You are very brave to share your story with so many people.

August 19, 2014 - 1:36 pm

Katie - I don’t understand why it takes people to have a ‘challenge’ to donate money for a good cause. Just donate the money. You don’t need to prove to someone that you need a challenge. Doing a good deed is more respected than following the band wagon. We’ve seen this being done for over 3 months now. It’s awesome, I agree. But some people need to just do a good deed on they’re own.

August 19, 2014 - 1:42 pm

ALS Ice Bucket Challenge | Awestruck Wonder - […] was an article a few friends had shared on Facebook and wanted to encourage you to check it out. It’s written by a woman whose family is currently walking through this disease and about her […]

August 19, 2014 - 1:45 pm

ALS Ice Bucket Challenge | raisedead - […] was an article a few friends had shared on Facebook and wanted to encourage you to check it out. It’s written by a woman whose family is currently walking through this disease and about her […]

August 19, 2014 - 1:47 pm

Mary Craig - My mother was diagnosed in 1984 after going to a general med doc, an orthopedist, and a neurologist. She could not even be diagnosed by a neurologist that had an ALS patient that I personally knew. We had to go to Kirkland Clinic in Birmingham, Alabama. No one in our area even knew anything about it. She had to go to the ER at a major hospital here and was told, “you are just here for the drugs”. She cried all the way home. It is so painful to see someone you love waste away by this horrible disease. The Doctor in Birmingham told me ALS would not kill my mother and also that she would not be in any pain. It did kill her and she did have pain. Not only physical but emotional pain. I am a nurse now and worked with an educated RN who told us in report that an ALS patient was abusing his wife by requesting she be in the room with him. After all he didnt need her in there. She had no clue what ALS was and what it did. Needless to say it is because God prevented me from doing anything that she is still alive to this day.

August 19, 2014 - 1:48 pm

Tracy - My husband fought this horrible disease for 6 years. He used to say the worst part was the humiliation of being an adult that could not even take care of the most basic hygiene. This disease not only took every shred of dignity from him, but also some of the most basic pleasures we all take for granted. He never got to hold his son or say “I love you” to him. Our son was 2 when my husband passed away. This disease is the ultimate torture!

August 19, 2014 - 1:49 pm

Mary - Thank you, Bo, for saying what needed to be said in order to understand what that ice water is REALLY all about. Don’t stop, keep going with that wonderful voice of yours.

August 19, 2014 - 1:52 pm

Bill - Hi Bo:
I was the caregiver to Kathy through her three-year slide into the abyss ALS placed in her path. Being both her partner and her caregiver presented a dual challenge: the caregiving was difficult but the easier half; being the partner witnessing what the ALS was doing to her (and to us) was far more difficult. In facing this challenge, one comes to realize that the most precious commodity we have is OUR TIME WITH EACH OTHER and THE LOVE WE SHARE. Though the major focus is on the ALS sufferer, the disease also has a devastating impact of the loving caregiver too. In meeting his needs, also take time to assess you place in his universe. Along with the pain comes insights and focus on the things in life that really matter. You are not alone in this journey, for many of us have traveled this way before. When things got tough, many times I would ask myself: “What would the Buddha do?” It helped — a little.

August 19, 2014 - 1:53 pm

Tamelia Jones - This disease have no mercy.

August 19, 2014 - 1:55 pm

Jeanette Muck - Thank you so much for sharing your journey! I attended an event at New Heights Church in Vancouver a year ago or so you were speaking at, and it moved me beyond imagine. My husband lives with Inclusion Body Miocytis. It is similar to ALS in many ways and I appreciate your words here. Any attempt to raise awareness and raise funds for these types of muscular diseases is a good thing.

August 19, 2014 - 1:56 pm

luann - well said. i have lived with ms for 25 years. hard, yes. but only a taste of what als patients go thru. i would like to share this japanese drama. i have watched it often. it is touching and inspiring. http://www.dramafever.com/drama/4373/1/The_Hours_of_My_Life/?ap=1

August 19, 2014 - 1:57 pm

Mary Beth - My father passed away from ALS 3 years ago. I appreciate your perspective on the disease because people are unaware of how difficult it is to care for a person with ALS.

August 19, 2014 - 2:07 pm

Cindy Rigamer - Thank you for sharing your insight and may you and your husband find peace in your love for one another.

August 19, 2014 - 2:15 pm

Teresa Michalek - I for one am for this challenge. I lost my husband in 2004 to this (yes) insidious disease. He was diagnosed in 1998 and passed in August of 2oo4. 3 of those years spent in a full care facility as I did not have the resources or help to care for him at home and I had to work. Every hour I could spend with him was spent at his bedside, reading, talking, telling him everyday things, singing to him. He smiled when I sang, don’t know if that was because of my awful voice or he loved it.) Before he was hopitalized he would walk from bedroom to bathroom with tubing from an oxygen tank hooked up to him. When he lost the use of his legs we had a wheelchair, tie his shoes for him, watch him closely while he ate so he wouldn’t choke on something till he couldn’t eat at all, among so many other things. Watching a proud, independent, caring, generous man slowly fade from you is heart wrenching to say the least.

August 19, 2014 - 2:15 pm

Sue DeLong - Bo, thank you for writing this, the life of an ALS patient. The only people who really know what living with ALS is like are the PALS and their families and friends. Like you mentioned, a lot of people have either never heard of ALS or known someone who has it. I only wish that when people take the ALS ice bucket challenge, they would talk more about it before pouring water on their heads. Some even forget to mention that it is for the ALS Assoc. Most people don’t know where to donate the money. My husband died from ALS at age 61 in 2008. To expand what you already described as the challenges of an ALS patient, try filling your lungs with air while the muscles that control your diaphragm have atrophied and you need assistance from a bi-pap machine strapped to your head 24 hours a day. What has been raised so far is a good start, but more funding and research still need to happen if we want to end this deadly body entrapment.

August 19, 2014 - 2:16 pm

Tracy Maletti - From the bottom of my heart thank you!!! I lost my dad to ALS, & was his primary caretaker. Everything you wrote is spot on, & I read it with years as it brought back the depth of what I went through with my daddy. Thanks again!! XOXO

August 19, 2014 - 2:19 pm

Norma Andrew - My husband also has ALS. We have known for one year. He can still walk somewhat, can feed himself and talk. It has taken a long time for me to accept how devastating this disease is and what it is doing to my beautiful strong man.
Who would ever think it could be so terrible. We have a lot of support from the ALS Society in B.C. with equipment, all without charge. The hospital bed, the chairs all cost a fortune but supplied as you need it. They know what we are facing from dealing with patients who are further along with the disease than we are. It scares me to think about it. As far as the Bucket Challenge is concerned, who cares how funds are raised, at least people are becoming aware of this disease and hopefully educate themselves. Yes, some doctors do not have any information about ALS and how to help their patients. Our doctor knew nothing, we were his first ALS patient! I include myself as I am suffering too as the caregiver. Our life has changed completely and I have to figure out where to put oil in the car, fix a broken chair or whatever else happens. Prayers and God bless all those dealing with ALS.

August 19, 2014 - 2:24 pm

Katy c - A wonderful piece. A year ago, I was preparing my 7th grade classroom for a new year of teaching–and hiking Mt Rainier, and cooking, swimming, running and having a normal life. Yesterday I received a feeding tube, am confined to a wheelchair, and can no longer speak. I am 54 years old and I have ALS.

August 19, 2014 - 2:25 pm

Janet Suriano - I watched my very best friend and my granddaughter’ other grandma go through this. It was one of the hardest things I ever did. I am so happy to see the ice bucket challenges on Facebook because with each one someone is learning what ALS really is. God Bless all who have accepted the challenge and their loved ones finally being recognized for the hell they are living with. Thank you Facebook

August 19, 2014 - 2:30 pm

A. Anderson - I lost my mother to ALS several years ago. No one who has not seen the disaster it causes could possibly understand this. Many advances have been made in the care of the illness since, but for some horrible reasons NO CURE!!!! I dont care how money is raised for research, only that it is raised and progress is made some how. I still have nightmares of the care she needed and the down hill progress that was so fast. I am looking forward to seeing her in Heaven and knowing her suffering was not in vain.

August 19, 2014 - 2:34 pm

Sherry Shrader - God bless you and your husband. Thank you for staying with him and taking care of him!

August 19, 2014 - 2:44 pm

Kaylee - Reading this makes me realize I don’t need to take anything in life for granted and to stop complaining over small things so much, because it could always be worse!! This is very touching!!

August 19, 2014 - 2:48 pm

Julie S. - Thank you so much for this article. I just lost my sweet dad in May to this cruel disease and it was a heartbreaking and unfathomable experience all the way through. Thank you all for participating in the challenge and for your donations! They, along with your love and support, make a tremendous difference to the families experiencing this monster. Blessings to you all!

August 19, 2014 - 2:51 pm

gary - Y not this 4 M.S. ?

August 19, 2014 - 2:56 pm

Lee Ann Yenchenko - My brother had ALS and passed in 2006. It.was horrible to watch my brother lose all of his muscles in his body and also his speech. He was 47 yes. Old with a wife and 2 kids age 13 & 17. That are still recovering from it. He was a state college tennis coach, a high school tennis coach, & baseball coach. Its a sad life to live knowing that u have your mind and no way to speak or move your body parts at all. They give u 3-5 years to live. Nobody was helping with raising any money for this tdisease. Finally someone is, PLEASE don’t take away our only hope.

August 19, 2014 - 3:01 pm

Jean MacDonald - I just couldn’t imagine the pain you must endure with this terrible disease of yours. I took the challenge from my Grandson Tristan. And I put that ice over me. And it was freezing cold but it is nothing like your pain! God Bless all of you suffering from this dreaded disease. I hope they find a cure soon! Jean

August 19, 2014 - 3:02 pm

Angela Mabry - Very touching and something I can relate to in my family. My father and brother both have Huntington’s disease, the cousin to ALS. All I can thin about this ice bucket challenge, that I’ve done myself, is the awareness being raised and funds being donated!!!

August 19, 2014 - 3:11 pm

Rose - Thank you. Your blog and this post are so important. In 2001 I lost my husband to this horrible disease. If any of these nay sayers had to live one week, even one day of what you go through during this time they would jump at the chance to pour ice over their heads and everyone else’s. I’m almost positive that these people have no clue how devastating this is…how heart wrenching it is to see a healthy, smart, loving person become trapped in their own body. Again, thank you.

August 19, 2014 - 3:14 pm

Peg Curley - What a well written letter expressing true feelings of how anyone dealing with ALS feels. My daughter has dealt with ALS for the past four years and it has been heart breaking for parents to see her in this condition. However, even tho she can only give us a half smile it means the world to us. Thank You.
Peg Curley
,

August 19, 2014 - 3:16 pm

nigel roe - It’s a wonderful, and insightful story that resonates with my wife and I who have a great friend that has the disease. Although she is very close physically and spiritually to us she has moved beyond the ability to communicate with us and we only know of her from her wonderful strong husband. The disease has immeasurably changed own feelings and abilities to deal with this disease.
All the best to you, we will continue to do what each individual person can.

August 19, 2014 - 3:16 pm

When Radical Is Sensible … | The Musings Of An Opinionated Sod [Help Me Grow!] - […] fact, if you read this article, you’ll see that even some doctors aren’t aware of what ALS stands […]

August 19, 2014 - 3:17 pm

Nancy Norcross - I like the ALS bucket challenge because it’s fun to watch on FB, but most of all it’s bringing awareness to people. What maybe some people don’t understand is that after you participate in the challenge you are still suppose to make a donation. In my area it is $10. Now just imagine how that adds up with this challenge going viral if everyone actually makes a donation. I don’t have a lot of money but I think most people are willing to donate a little something. I did the challenge and nominated my children along with a few others, I will donate my $10 and another $10 each for them. That’s affordable and for a great cause too. My children have already asked me about other challenges for others. Therefore it’s bringing awareness to what could be other causes too.

August 19, 2014 - 3:22 pm

Marty - Thank You for your blog. My family also suffered from ALS with my brother. He was only 29 when he was diagnosed. He died at age 36 in 2001. I miss him every day. He was a avid Carolina Gamecock, Golf, Redskins and Braves fan He and I cried when Payne Stewart and Dale Earnhart died. The hardest thing I had to deprive him of is popcorn at the movies. He loved going to movie’s. By the way if you have a Carmike theater near you, your husband will get in free. I think the ice bucket challenge is good not only raising money but getting people talking about this terrible muscle killer which took my baby brother away from me and his family

August 19, 2014 - 3:22 pm

Denise - You capture the effects of ALS very well. My husband passed away in 2011 from this horrible disease. He was 54 years old. His father had it and now I have a 29 year old son who is scared to death he is going to get it. I’m hoping there is a cure or at least a treatment in his lifetime and hopefully mine as well. Some people live with years with this disease, my husband lived only about 18 months from his diagnosis. I suspected something was wrong about a year before that, but he was a stubborn man and wouldn’t go to the doctor but I think he suspected. He was stoic and brave and never let me see he felt sorry for himself. I am so proud of the way he handled this and how we as a family were able to stay together until the end. I wish you peace.

August 20, 2014 - 2:40 pm

Patrick Farrell - It’s only narcissism if the person in the video doesn’t clearly point people to a path for helping fund research or build awareness for ALS. My biggest concern is that celebrities dousing themselves are not guiding viewers to clear ways to give or learn about this monster.

Per Elisa’s comments… I’d agree. 13px or 14px is the current standard. Jane can tweak the CSS a couple pixels per chance?

August 22, 2014 - 4:53 pm

Giving feels GREAT! | NerdLush - […] dollars has been donated and b) there are millions of people who now know about ALS. I really like this response. If someone doesn’t approve- or thinks it’s dumb- then they shouldn’t watch the […]

August 22, 2014 - 7:36 pm
August 23, 2014 - 9:37 am

L’#IceBucketChallenge non è una boiata | Major Tom 612bis - […] americana sposata con Steve Stern, a cui nel 2011 è stata diagnosticata la SLA. Bo tiene un blog dove parla della convivenza con la malattia del marito. Lo scorso 15 agosto ha pubblicato questo […]

August 23, 2014 - 8:02 pm

The Ice Bucket Challenge & A Yukon Imp–Detour #11 | 2000 Detours To Zen - […] disease works its way down the body, and if you want to know how swiftly terrible ALS can be, try Bo Stern’s list of Empathic Experiences. Or be inspired by Rosemary Lambert, who bravely shares her ALS journey in the remarkable Live […]

August 24, 2014 - 1:21 pm

Dear Church, can we make room in our hearts for it all? - […] first-hand account from dear friends of ours who are bravely facing this disease head-on and learn What An ALS Family REALLY Thinks About the Ice Bucket Challenge. (Go Team Stern! May the entire internet rally around you!) You might also want to watch this […]

August 25, 2014 - 5:27 am

What I Learned From Getting Suckered Into Completing The ALSA.org #ICeBucketChallenge | Inc.sights - Building Influential Brands To Influence The World - […] who have a different opinion, which I fully respect. In our case, we felt that this message from a family coping with ALS helped us decide to move forward in our support for this […]

Two Sides of the Same Coin

 

This is Florence Marigold.

 

flo-at-2.jpg

 

She is two.  And darling.  And very sick.

 

 

 

This is Steve Stern.

 

photo-2

 

 

He is 52.  And wonderful.  And also very sick.

 

 

 

Steve has ALS and Flo has SMA, which is sometimes called “Baby ALS” – and if there was ever a term (and disease) that should not exist, it’s that one.

 

 

 

I met Flo through her mom, Michaela’s, blog.  Michaela and her husband are people of great faith, enduring an unimaginable storm.  Michaela writes like the wind – her words roll over and under and through with a graceful beauty that packs a gale-force punch.  I recently told Michaela that I wish Steve could meet Florence (he already loves her through her pictures and her mom’s words.)  He couldn’t hold her, but he would try to sing to her.  He would pray over her and tears would roll wild and he would believe for her.  They are sojourners, Steve and Flo, traveling together through the worst diagnosis and held together by the best God.  They each reflect Him in breathtaking ways.

 

 

I’m sharing this today for two reasons.  The first one is:  read Michaela’s blog.  It’s just beautiful.  The second one is: would you join Steve and I in praying for this family as they walk the soil of the Shadowlands and also welcome a new baby in just a few weeks?  If prayer makes a difference, and I’m certain it does (I’m proof that it does!), then this is worthy place to invest.

 

AlviarPhotography_M.Evanow_July2014-3.jpg

And finally, a letter to Florence from Team Stern>>

 

Dear, darling Flo, 

 

Do you know how beautiful you are?  Your life pulsates hope.  Our prayers for you are many and brazen. They are storm-the-gates, rescue-the-damsel sorts of prayers.  And they are also beauty-from-ashes and joy-from-sorrow prayers.   You are so little to take your place among the soldiers fighting a neuromuscular Goliath, but you are not overmatched. The God of David is the God of Flo.  

 

We pray for your heart and your hands and your hope.  We pray that you feel defended and loved every minute of your life.  We pray that Jesus Himself visits your dreams and gives you peace and rest and joy beyond reason.  

 

You are a miracle. Though we are far away, our feet share the same battlefield and we are joined at the heart.  

 

With all our love, 

 

Steve & Bo

 

 

P.S.  Can you just take a second and look at the pictures of Steve and Florence?  Those smiles just make me so happy and challenge me to smile, too.  That’s all.

 

 

August 5, 2014 - 8:37 am

Jane Lellman - Thank you for the introduction to the beautiful Florence!! I will pray fervently!!

August 5, 2014 - 12:38 pm

Michaela Evanow - I’m a speechless mess.
Bo and Steve…
Thank you, is all I can manage to scrape together right now.
xoxo

August 5, 2014 - 1:14 pm

wendy hodges - Only this God…only this God…beauty…for ashes..thanking God for these beautiful faces and hearts..for those who love them and for allowing us to love them too..Thank you Lord..for beauty indeed.

August 5, 2014 - 1:21 pm

Adriel Booker - This makes me so happy – that this introduction gelled and you can be such an encouragement and blessing for one another. <3

August 5, 2014 - 5:24 pm

Sarah Fairbrass - How beautiful to hear of two of God’s warriors finding each other and sharing such a bond. I’ve known Michaela for several years; she is one of my niece’s best friends; and have and continue to pray for sweet Flo and her beautiful family. Now adding another beautiful heart to my prayer list. Thank you for writing this and for being a grounding for Michaela.

August 5, 2014 - 7:41 pm

Teresa B - Prayers for sweet precious Flo. What a darling little one who has to be so brave. Gods blessings.

August 19, 2014 - 2:22 pm

Cyndi B. - I just found your blog from Facebook with your comment about the ALS ice bucket challenge. You write with such honesty and faith and I really love it. I too am struggling as a care giver for my husband but his disease is not physical. It seems very easy to play the “We don’t deserve this” game. I have to work regularly to accept that this situation is exactly where the Lord wants me so He can support me and our family. I read something that said here on earth is the only place the Lord can support us and bless us in this particular way. In Heaven we won’t need that same kind of support. I found that thought brought me much needed understanding about suffering and struggle. None of us deserve anything, good or bad, so that eliminates that argument. It’seems not why is this happening to me, rather how am I going to deal with it? Alone or depending on the Lord? I choose not to go it alone, finding strength that I never imagined I could have (most days I am successful at this but I’m still growing.)
In my research to help my husband with his health issues and being willing to look at any and everything I came across information on Cannibus and it’seems neurological properties. In particular a strain called Charlotte’so Web that has been developed for children with seizure disorders. It’seems being used to treat several neurological diseases such as MS and Parkinson’s. It was very interesting and hopeful. One of the websites I came across was Realm of Caring. Just wanting to share anything that might bring relief in any form.
You and your family are in my prayers.
CB

Three Hours of Darkness

 

Last week was rough and it culminated in one very difficult night as I was preparing to leave town for 24 hours and dealing with everything necessary to do that while also making sure Steve has round-the-clock care. I wrote this on Friday night and I’m only sharing it today because we are -thankfully – on the other side of it and feeling so much better and stronger now.  I think it’s important to tell the dark parts of the story, too.

 

———————————–

I’m sitting here in bed tonight, listening to Steve struggle for breath, and struggle harder still for hope and it is almost more than I can take. We have each felt beaten today. This morning I complained to him about how I need a break, a bit of time away, a good night’s sleep. I regretted my words almost immediately and then I went for a run and replayed them in my head for 3.74 miles.  Tonight I feel suffocated by my own inability to get this right. He feels suffocated by his own body and a sickness that is cruel beyond telling.  We are a sorry pair.

 

I’ve written a lot about ALS, pointing to the beauty buried in the soil of this battlefield, but tonight it’s hard to see it. It’s hard even to see my hand in front of my face – everything is inky black and there is no sign of sunrise. I keep thinking of the thief on the cross, suffering the cruelest death, discovering the promise of a home in paradise, and then hanging there in the dark for three hours. I can almost see him – suspended between the end and the beginning; fighting for every breath and wondering if the promise was true. Would this death end in life?  I feel like we’re living our three hours of darkness.  So the truth I cling to is this:  Even though the thief couldn’t see Him, Jesus was very near; just one cross away.  He is surely in our dark too.  He is intimately connected to our suffering and infinitely aware of all the ways we are gasping for hope and strength to keep fighting this battle.

 

On the beaten days, faith is all I’ve got. I’m not a single bit tempted to toss it out and go it alone. The amount of muscle and ingenuity I have to bring to this battle on my own is laughable.  He is my only hope.

 

Since I started writing this, the medicine I put through Steve’s tube an hour ago has begun to work and his breathing sounds better. He is drifting to sleep and I am praying for rest to sink deep into his bones and into his heart and into his hope. And I’m trusting the only One who can see in the dark.

 ———————————

 

 

 

As I said, we are better now and we are thankful.  If you would like to shoot a prayer up for us, we are looking for some help with Steve’s care at night and it’s not an easy spot to fill. We’d love prayer for supernatural fitting together of the pieces we need to walk this road with grace and joy.

 

With hope,

 

Bo

 

August 4, 2014 - 9:18 am

Connie Reid - Prayers to Steve and you–I know they will be answered..and HELP is on the way!!!–Peace and comfort to both of you and your children.Connie

August 4, 2014 - 9:25 am

Vangi - My prayer went something like this for you and Steve:
(Burst into tears) Jesus….Jesus…Jesus…
(Burst into tears) Jesus…Jesus…(a few somewhat intelligent requests)…Jesus
(Burst into tears) Jesus…Jesus…Jesus

Not my most eloquent of prayers, but I know he weeps with you, and that’s a good enough example to follow.

Thankful for medicine. (hate this disease). Thankful for the “Someone” that is listening in the three hours of darkness, and is, truly, “a very present help in time of trouble.”

Love you, sister!

August 4, 2014 - 10:04 am

Angie - Praying for peace, strength, hope, and joy in the midst of your battle. Thank you, Thank you, Thank you, for your transparency.

August 4, 2014 - 10:42 am

Terry Scanlon - Dear Bo,
As I care for my brother who is in the late stages of ALS your words have brought me such strength and clarity of Faith. I pray for you and Steve and thank you for this post which reminds me I am not alone in those moments of human frailty when my anguished heart seems to be coming apart. Light does return and I know my redeemer has carried me through once again. Blessings

August 4, 2014 - 10:52 am

Jacqueline Rice - With tears rolling down my cheeks, the prayers are being sent up for strength and peace during this time. And a compassionate and competent person to care for Steve at night.

August 4, 2014 - 10:58 am

Beth - Jesus be their strength right now. Be their peace and rest. Clasp them tight to your bosom Jesus.

August 4, 2014 - 11:08 am

Sue - (I am Rob’s mom and Laurie’s
mother-in-law)

Late last week I was abruptly
awakened by not a thought or
picture reminding me to pray,
but two large printed words:
STEVE STERN.

Steve, Bo, your family and your
battlefield were/are completely
covered in prayer. Father, Son
and Holy Spirit are present,
holding you, comforting you,
giving you wisdom and being
glorified in your struggle.

Steve and Bo: you are an
inspration to our family.

August 4, 2014 - 11:16 am

Beth Yancey - Dear Bo,

I can’t thank you and Steve (and your kids)enough for fighting the good fight and sharing about it so openly. What a good metaphor to use the theif on the cross. Since you share, other precious ones will have courage to face their hours of darkness. Praying for the Light of the World to shine on you and for you to reap a thousand fold for all the good seeds you sow. Also joining you in prayer for the perfect help to fit right into your family and bless you all with tender, skilled, and compassionate care.

August 4, 2014 - 1:18 pm

Jane Lellman - Although I am sharply knowing some of what you are going through, I feel helpless. But I am also absolutely convinced he is there with us in the dark. I am praying his light continues to reach you where you are. Please know my heart is hurting for you.

August 4, 2014 - 1:18 pm

Kathryn V. - Hugs and more hugs and steady prayers.

August 4, 2014 - 4:27 pm
August 4, 2014 - 4:29 pm

Cindi Dunn - Bo…I have known you have been struggling, I guess I should say I knew Steve and you both were struggling, as I have been awakened both Sat night, (early Sun morning actually…2-4:30am, and last night, from about 1am until 3:50am or so…both times you and Steve, were on my heart & in my prayers, and I felt like I was told to breathe for Steve early this morning…so I did…so glad things are better (some) today. I love you both so much! Only eternity will reveal all that our wonderful Father is accomplishing in these 3 darkest of hours! Love you so! cindi

August 4, 2014 - 9:23 pm

Denise Miller - Dear Lord, Though Bo and her family feel a weakness at times in the hours of darkness may she rest assured in the strength that you have for her in each new day and the strength that she gives to others who share in this battle. Please provide the perfect in home health person to share with the nightly care for Steve.

August 4, 2014 - 11:05 pm

Phil Camden - Hi Bo and Steve.

With tears, love, prayers and much love from Australia.

August 5, 2014 - 10:21 am

Laura R - My heart is so full, all the pain people I care so deeply for are going through. I have found myself on my knees, pleading with Jesus for some understanding as to why there is so much suffering. I have felt so powerless….I can’t help…..the Lord showed me this morning that I can through prayer! So know that you are in my heart, thoughts and abundant prayers..love and hugs Laura R.

August 5, 2014 - 12:35 pm

Helen Campbell - I don’t even attempt to understand your trial, but I know our God is great. I know that He will never leave you. I know that He is LOVE. May you have unbelievable strength and power. May you digest His sweetness and rest in His goodness. May God grant you the desires of your heart. May Steve be mightily healed in the name of Jesus.

Sincerely in Him,

Helen Campbell

August 18, 2014 - 12:15 pm

Nicole - I can’t help but think of how my Mom felt when we were taking care of my father. Every time we caught ourselves feeling tired and drained from the hard work of it all we would immediately feel guilt. Guilt that what my father was dealing with was far more frustrating and guilt that he often felt like such a burden to us. I remember telling myself, ‘God only gives you things he knows you can handle.’ And I have to say, God must think pretty highly of our personal strength.

August 18, 2014 - 7:23 pm

bo - Phil Camden – a million tears, prayers and SO much love back to you, sir! In this together, you know. -Bo

August 19, 2014 - 12:10 pm

kathy - Thank you for sharing Bo. I too face the same struggle as you and it is comforting to know I have a sister in Christ walking the same road who truly gets it.

August 23, 2014 - 11:37 pm

Patricia Frisco, BSN, RN, CDE - Enlightenment much appreciated. I am so sorry for your struggles…prayers sent…