To Live And Ride With ALS

Breathe in.

There are no rules to how life plays out. We have no control over it. The only thing we have control over is how we face those challenges. We are not so much a product of the challenges placed before us as we are a product of how each of us has faced those challenges.

December 31, 2014. 

We had been at the neuroscience clinic undergoing tests for about 3 hours. My wife (also Rae) and I had been trying to get used to the idea that I might have ALS for just a few short weeks. And today we ran out of other things to rule out. After the neurologist left the room a nurse and social worker entered with a book of resources and started talking about such practical issues as local caregiver support groups and renting wheelchairs. I think that was the moment it finally hit Rae. A few tears rolled down her cheeks as the nurse guided us through what was available but she maintained her composure throughout. Sure there were second and third opinions in our future but unfortunately ALS is quite efficient at providing its own second opinion. We walked home in silence that sunny but cold December day, both lost in our own thoughts. Then about halfway home Rae turned to me and said “promise me you’ll never give up.”

Sometimes you need to be careful what you ask for.

I think we diagnosed the disease fairly early in the process. Although who knows how long your body and brain compensate and deny respectively before you can no longer ignore the fact that the buckets of Ibuprofen you’re throwing at it aren’t helping. I’ve heard of people undergoing years of tests and referrals before finally arriving at a diagnosis of ALS. If I had to think about it there were subtle changes in my voice early last summer but I could ignore that. However it was exactly a year ago that I began to have difficulty playing guitar and that I couldn’t ignore. Not that I was ever going to be the next Jimmy Page but it was a form of relaxation for me and playing Yellow Submarine kept my newborn grandson Jack happy. Today I can barely raise my left arm high enough to reach the guitar neck. This shit doesn’t mess around. There is only one finger on my left hand I have any control over. With a superhuman effort of willpower (and extensive tongue chewing) I can extend my middle finger about half way but enough to get the point across. This is one of many ironies of the disease.

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I would say, “ALS, this is for you,” but for some strange reason I kind of admire its purity. For all our knowledge of the human body we know next to nothing about this. There is no cure, no treatment, no way to predict how it will affect any given individual. That admiration may change as symptoms progress. But that leads me to one of the purposes of this blog. There isn’t really much out there about the effect of ALS on cycling or visa versa. It was the first thing I checked on when the neurologist said I could have the disease. Well actually, now that I think about it, that was the second thing. The first was to check Wikipedia to see if there was a special type of “Ray Spooner ALS” that was somehow different from that other type of ALS that had been in the news so much of late. But alas, no.  The one thing I found about cycling was Doug Schneebeck’s ALS Blog: “Biting Back on the Bike.”  This has practically been my bible over the last eight months.

But if I can add to that body of knowledge, it might help someone. I understand that the disease affects everyone differently. I understand as an N of one, my research has limited broader application. But the process is as much a part of the journey as the destination.

First the good news. In February my pulmonary function test results were 122% of predicted value for someone of my height, age, wt etc. Six months later they are 116% of predicted value. All this cycling shit has to be good for something. Was thinking of having a celebratory cigarette.

Now the bad news.

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This is what 99% of the road around here looks like. Yet I still managed to fall off my bike yesterday. Hey, I’m talented. What can I say. But holding onto the handlebars is an issue. And don’t get me started on braking. I need to fix these problems before we hit the mountains in California. We have an appointment with a prosthetic maker next week. I’ll let you know how it goes.

Whether we have a diagnosis or not, there is a number to our days. The problems that we are going to face won’t change, but we can change how we face them. Because that’s ultimately who we are. Not a product of the challenges placed before us but a product of how we have faced those challenges.

This is how we chose to face this challenge.

Peace, love and midwives

Ray

P.S. Breathe out.

21 thoughts on “To Live And Ride With ALS

  1. Ray–
    Beautiful post. Reading it to my husband as we drive to Chicago. I am copying your opening and closing statements as a reminder of how we face anything in life. Thank you for sharing yourself with us…your thoughts, feelings, and spirit are a gift to those of us lucky enough to receive.

    That wifey of yours kicks ass, too…

    Peace~~
    Trish

    Liked by 1 person

  2. Dearest Ray. We are with you all the way. Love from Me and Sandra and Asa whom you delivered. Best of freinds forever. May I assume that Leonard Cohen will be accompanying you all the way too.

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  3. Reading along and riding along. Hoping we’ll have laughter to go along with these tears. Tell Rae to make you weightloss cake.. Then eat the goddamn cake WHILE RIDING YOUR BIKE!

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  4. Loved this.

    Have you seen teamgleason.org ? Steve gleason/ no white flags

    Might have something of interest to you if you haven’t already seen it

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  5. Dear Ray,

    Greetings of peace from all the Sorocks. I usually keep calm and carry on by thinking that on the in-breath God’s love is as close as one can get and as everlasting as one can imagine. On the out-breath I think about a few things I am grateful for at that particular moment. Then I draw on the wisdom of AA and say: “I have enough, I am enough, I do enough.”

    You know about my buddy Glenn Pransky who has done the Pan-Mass Challenge bike ride each year for the Dana Farber Cancer Institute. He said if he were you, he would do the same bike ride you are doing and then said something like: “whatever it takes, he would finish it.” Of course, being a musculoskeletal disease physician, he knows people with strokes who have done similar bike rides. He also said he would try out all adaptive equipment he could before leaving CA, up to and including recumbent bikes, although those would be slow as hell on the hills, he said. He also said by all means talk with him if you like. I can give you his contact information.

    God Bless,

    Gary

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  6. Please continue to write Ray. We are so far away from Urbana. This will help us to feel that you are near. Following you with love and prayers…

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  7. Such a way with words! I must admit I cried while reading it, but so much of what you said is true. You always have a way of opening up my eyes with how you choose to look at things. You are incredible!!

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  8. Dear Ray. Your Mum sends me your blogs. I don’t think we have met since you were a baby. You can think me a stupid old woman, but I might have a glimmer of hope for you. I avoid the medics. I do believe we have control of our lives and although we inherit our genes, our health problems can be overcome by lifestyle. We are what we eat/drink and digest. Since 1985 I have been vegetarian and subsequently vegan. I endeavour to grow and prepare my own food and never eat or drink out. I am lucky enough to have a free supply of well/spring water and only drink that or green tea. Yes I live healthily and happily in my bubble, but watch others getting ill and dying around me. I won’t bore you further, but do think you can reverse your ALS. Do think about the alternative route – it could help you.
    Best wishes from your cousin Josephine. xx

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    • Hi cousin Josephine. Thanks for you thoughts. I lead a fairly healthy life and have also been a vegetarian since the ’80s.Although not vegan (must have milk in my tea?). Apart from exercise I have no vices. We eat fairly healthy although could probably do better. Not to make light of your suggestions but I was thinking of taking up a vice

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      • hi mondo (aka sum-in-law)With the “kid” at your back and waiting of you at the end, HOW CAN YOU GO WRONG?IN IN CASE YOU DIDND’T KNOW, I LOVE AND ADMIRE you. MUM-IN-LAW, ELTER BOBE TAUBYM

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  9. […] There are no rules to how life plays out. We have no control over it. The only thing we have control over is how we face those challenges. We are not so much a product of the challenges placed before us as we are a product of how each of us has faced those challenges. {To Live And Ride With ALS} […]

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