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More than you ever hoped to know about ALS

Now that I feel I have my land legs under me again, I’d like to tell you a little bit about the nature of this fight we’re in.  Because here’s the thing:  if I have to know this stuff, then so do you.  It’s only fair, right? Okay, I guess if you’re not into this whole downer of a  topic, I will excuse you for a day as long as you promise to come back tomorrow.

The bottom line with ALS is this:

Good guys:  Motor neurons.  They tell your nerves and muscles to “work, already!”

Bad guys: Glutamate and some other mysterious villains that overpower motor neurons and kill them.  No one knows why the bad guys get out of control.

In ALS (which is quite rare, by the way, effecting only 1 in 100,000 people), the motor neurons die randomly, which causes muscles to atrophy and eventually all voluntary muscle movements are affected including breathing, swallowing and speaking.   There is no cure for ALS.  There is a typical prognosis for life expectancy but I’m not going to tell you that.  It will take you 12 seconds to google it, but I wish you wouldn’t and here’s why:  if you love us and want to pray, the medical statistics will not boost your faith, please trust me on this one.  Their prognosis is built on numbers.  Steve’s prognosis is built on Psalm 139:16.  All the days ordained for him have been written in God’s book – before even April 22, 1962 came to be (by the way:  I love his birthday.  4-22-62 just has a nice, gentlemanly sound to it, don’t you think?)

Now, with some diagnoses, you would leave your doctor’s office with six prescriptions and a date for surgery or chemo or radiation and the very next day, your life would change dramatically.  With ALS, you pretty much leave your doctor’s office with the name of a counselor/social worker and the offer of an anti-depressant should you find you need it.  It’s not that the medical community lacks compassion, it’s that they lack a cure.  (One drug is available but  for various reasons we are still weighing out whether or not it will be a part of Steve’s treatment.)

So these are the next steps for Team Stern:

  • Steve is sticking like glue to a very strict diet and taking a supplement that is helping to improve his energy and strength, even though the taste of it challenges his normally sunny disposition.
  • He is respecting his body’s need for extra sleep.
  • He is continuing to golf with his wonderful friends, despite the fact that his handicap has risen sharply.  (Truth-be-told, it was this change in his golf game about a year ago that alerted him to the fact that something was amiss).
  • We are hoping to take part in two clinical research trials.  One will just involve taking a pill here at home, the other will require three weeks in Portland with IV therapy for six hours every day.  Our doctor is very excited about the possibilities with this new treatment.  We’re very hopeful Steve will be accepted for this study not only for what it could do for him, but also for the gains it can make for those coming behind him who face this.
  • We are praying for healing and the restoration of what has been lost.  All the time.  Every day.  Without ceasing.
  • We are also making very intentional decisions (I’ll write more on this next week because it’s been one of the most remarkable parts of this whole stormy season).
  • We are trusting God with the results of all these things, landing once again on Psalm 139:16.

I guess that’s the rundown.  I never want to give too much glory to the gory details, but it helps us to be able to get some basic information out so people understand the gist of things and don’t need to listen to me prattle on about it in the produce aisle at Safeway.

We sure do love you all – each and every one – and are so grateful for your continuing example of steadfast friendship in the face of a fierce fight.  Oh, how great is His goodness which He has stored up for us!

Believing even the tough days are ordained days,

Bo

P.S.  I just re-read this and I know that my tone is a bit light.  Please don’t be offended by it…it is both a coping mechanism and the great grace of Jesus that allows my family to view such a weighty matter from a place of peace.  In the weeks and months ahead, happy days will come and go (and I will be honest on the sad days) but we have the promise that His peace surpasses every anxious thought.

February 13, 2011 - 2:18 pm

stephanie smith - bo, thank you for sharing your life with us. we here at the smith household are standing with you in prayer and love. you, steve and whitney have been an amazing part of our life – the start of life with our beautiful boy, jesse. one of the great memories of that first week was the time at youth group with praying for jesse, us and chelsea. we are praying for you and your family for strength, peace and wisdom as you walk thru this. love to you, stephanie

February 13, 2011 - 2:20 pm

Annie - For someone watching and reading from what seems like a ways away (believe it or not we did try to get to you guys this morning to say hello, but we kept running into lovely people along the way and before we knew it, you were gone), this brings such hope. I like specifics to pray for, and this gave me plenty. Believing with you. ~The Schraders 🙂

P.S. I love the new blog/site.

February 13, 2011 - 2:34 pm

Dianna - Bo~~
We love you & Steve. We will pray. and then we will pray some more. We, like you, know the power of the God we serve! Thank you for your updates and honesty.
Standing alongside you believing for miracles upon miracles in the days ahead!
D.

February 13, 2011 - 3:02 pm

Jill - Anyone who knows you, knows that you have a gift to process and present topics and issues with an amazingly “light” heir while you’re hitting the thing out of the ball park! Thus, you are secretly a “heavy hitter!”…with a “light” touch 🙂
Knowing very well that the depths of your Spirit is crying out to the depths of the Spirit, I sure appreciate your continued authentic and honest communication while you’re processing the current Stern family warfare. It’s not of this world. It’s not against flesh and blood. But our weaponery is mighty to the pulling down of the strongholds trying to exalt themselves above the truth of Jesus Christ.
Ps. 139:16….pretty much gives us the right angle. The story is written, and it’s a best seller. Steve is hemmed in, behind and before, by the author and the finisher of our faith.
Proud of you;hurting for & with you all…
Love, Jill

February 13, 2011 - 3:20 pm

Nita Belles - LOVE the clinical trial idea. I have a friend who had late stage prostate cancer before they found it. He has been on one clinical trial and the next for about 10 years with good quality of life, working (bible scholar and writer) taking vacations and spoiling grandkids. 🙂 However we get punches at the devil over this, clinical trials, diet and prayer, I’m good!
Love you guys! Looking forward to our coffee date Thursday Bo!

February 13, 2011 - 3:58 pm

Annie K - We’ll continue to pray, pray, pray for you guys!

February 13, 2011 - 3:58 pm

Gwen McIntosh - Thankful for your gift of putting into words everything to be said – so much better.

Praying, but not googling. xo

February 13, 2011 - 4:18 pm

Jane Williams - So here’s my prayer for you, Bo and Team Stern…. that all the people that Jesus has lined up for your lives to affect will be sent your way in one fell swoop. And that all the ‘other side’ perspective-learning for the future comforting of those you might not otherwise be able to comfort will be infused so purely and completely and honestly that Jesus will just have to get to the best part super quick– the total, miraculous drop-on-our-face healing! — ushering in the mightiest, greatest move of the spirit that we’ve ever seen. May it be so.

February 13, 2011 - 5:15 pm

Laurie - Mrs. Stern, I have never met you, but i love you. I love the messages of hope that you bring and I love that God’s love just radiates off of you. I said a prayer for your husband and your family and will continue to pray. Just wanted you to know you are covered in prayer, even from some unlikely places, like strangers. Take care– Laurie

February 13, 2011 - 7:29 pm

kathy - James 5:15 Isaiah 53:5 Matthew 9:28-30 Matthew 9:6-7

There is no love greater.

Isaiah 40:29 Psalms 31:23-24 For family. John 14:26

1 Samuel 26:23 Psalm 18:2 Isaiah 59:1 Isaiah 26:3

The Stern family, you are on my heart and in my prayers daily. God bless you all. We the family of God are in this journey in prayer with you.

KH

February 13, 2011 - 9:10 pm

Tim - Like the new look on the site.

As explained before I have lot’s of people praying for you and the Stern family but especially for God’s miraculous touch in your lives.

February 13, 2011 - 11:54 pm

taylor - Bo,

standing along side you and team stern. always! believing for GREAT miracles, peace, and a deep season of love!!!

Love you all!

February 14, 2011 - 1:16 am

Amy - Bo I have been following your blog since I was blessed by your speaking at a Selah conference at George Fox University several years ago. Team Stern is in our family’s prayers, and I know you know you’re not alone in this fight. Love to you all from Welches, Oregon.

February 14, 2011 - 9:21 am

Joyce - Need any new receipes ? I went mostly vegan and gluten free last year.

February 14, 2011 - 11:26 am

Heather Sutter - Thank you for sharing, Bo. Yesterday at City Church, we all prayed for Steve, and there was such a strong presence of God in that place and a strong sense of great faith rising up in the people there …. believing for a miraculous testimony of healing!!

Continuing to pray for you guys all the time,
Much love,

February 15, 2011 - 6:45 pm

The Dean Yoder family - is standing with you.

February 17, 2011 - 9:32 am

The Scott Mishler Family - We’re standing with you also and praying – love you guys!

February 18, 2011 - 10:39 pm

Christina - While searching for movies to add to our Netflix queue, for our children. 🙂 I somehow navigated away from Children/Family and landed in the documentary section. As I glanced through the suggestions for me I came across “So much, so fast”. It is a movie that “chronicles the events that unfold after 29-year-old Stephen Heywood is diagnosed with ALS (Lou Gehrig’s disease).” Here is the complete description:

So Much, So Fast
2005NR 87 minutes
Filmed over five years, this documentary from award-winning filmmakers Steven Ascher and Jeanne Jordan chronicles the events that unfold after 29-year-old Stephen Heywood is diagnosed with ALS (Lou Gehrig’s disease). Stephen decides to marry and start a family, while his brother rallies a group of renegade scientists to find a cure. Armed with a sense of humor and undying love for Stephen, the Heywood family refuses to give up hope.

Cast:Stephen Heywood Director:Steven Ascher, Jeanne Jordan Genres:Documentary, Indie Documentaries, Social & Cultural Documentaries This movie is:Emotional Format:DVD

Now please know that I have not seen this movie. I don’t know that it is appropriate in your families situation, but you came to mind when I saw this. I’m not sure of it’s authenticity or correct portrayal of ALS so please know that if you do decide to watch it at some point.

Praying for your family.

Christina Daurer

February 24, 2011 - 10:30 pm

angie wenger - Thanks Bo for sharing what is happening with Steve, you and family. Love you and am praying for you! Grace and Peace–Angie