What An ALS Family REALLY Thinks About the Ice Bucket Challenge

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!

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!

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.

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!

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!

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!

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

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

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.

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.

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.

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.

Kim Hutchison - Thank you for this perspective…

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

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.

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

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

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.

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.

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

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…

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

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’

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.

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!

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

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!

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

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

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!!

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.

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

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.

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!

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.

Kathryn - Thank you so much for writing this.

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

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.

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.

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.

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.

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.

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!

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!

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.

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

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.

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!!

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.

karen polsky - Thank you for writing this.

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.

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.

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!

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?

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.

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!

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.

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!

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!

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.

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!!!!!!

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…..

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!!

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!

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.

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

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.

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.

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!

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.

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

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!

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.

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.

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

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!

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.

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.

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.

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.

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!

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!!!!

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

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

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.

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!!:)

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.

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.

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!!!!!!!!!!!!!!!!!!

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.

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.

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!

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!

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❤️

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.

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!!

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.

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….

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.

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.

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~

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!

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.

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

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

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

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?

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.

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

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.

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!

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.

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.

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

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.

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.

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.

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.

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..

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.

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.

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

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 ….

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!

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.

Laura - Thank you for sharing and God bless you.

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.

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.

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.

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!!!

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!!!

Jacquelyn Strayer - http://www.forbes.com/sites/matthewherper/2014/08/19/think-the-ice-bucket-challenge-is-stupid-youre-wrong/

This is a GREAT article!

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.

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!

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!!!

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

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”!!

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.

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.

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!

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.

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.

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!!!

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

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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!!

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.

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

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.

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.

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!

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.

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!

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.

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

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.

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

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..

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.

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

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!

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!

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!

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.

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.

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.

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.

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!

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.

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.

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!

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!

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!

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

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.

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.

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.

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.

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!

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.

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.

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.

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.

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

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.

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.

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!!

gary - Y not this 4 M.S. ?

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

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.

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.

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.

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.