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,
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.