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  • chris-spott

    Member
    April 17, 2023 at 9:55 pm in reply to: What Things Would You Do Differently If Diagnosed Today?

    I would travel as much as possible before I could no longer physically do it.  Unfortunately I was diagnosed in March of 2020 when the whole world shut down.  By the time travel restrictions were lifted I was in a wheelchair.

  • I have been writing some essays for folks on what ALS has been doing to me and how I’ve dealing with it.  Here was my last one.  Hopefully some of the salty language does not offend.

     

    Atrophy.  Merriam-Webster Dictionary defines it this way:

    • Decrease in size or wasting away of a body part or tissue.
    • A wasting away or progressive decline.

    A disturbing description that can make the imagination shiver.  An even more disturbing observation that can make reality shiver … watching it happen in real time to your own body.   To witness, to feel, to actually experience the wasting away of body parts.  Muscles disappearing before your eyes.  Legs, arms, hands, feet shrinking.  Movement slowing.  Its one thing to be in an accident and wake up paralyzed.  A sudden shock of finality that you must immediately learn to deal with.  My paralysis is happening in slow motion.  A little bit at a time as the pool of molasses thickens around me.  I can stand but my legs slowly become undependable. My fingers gradually become unreliable. My arms become leisured in their usefulness.  My emotions are exhausted because uncertainty is constant.  I’m not sure how to deal with what comes next because I don’t know exactly what’s coming next. Or, perhaps I do but I want to deny it.

    How does it happen?  With this disease, the motor neurons in my brain and spine breakdown and die.  When this happens my brain cannot send signals to my muscles.  Because the muscles no longer get a signal they figure they’re not needed anymore so they decide to pack up and leave.  Atrophy.  One would expect a uniform departure of the muscles.  But, in fact, it’s quite random and disorderly.  It’s somewhat fascinating to watch this muscular behavior.  Like a bunch of kids playing dodge ball.  Starting out as a large group dashing about the flying balls.  One by one they are picked off and removed from the game leaving fewer kids with large spaces between them.  You start to see divots under the skin as certain muscles have dissolved away.  It’s then you understand that biceps, quadriceps or calves are not one big muscle but layers of individual muscles.  Each one independent but participating as a whole.  Each one decreasing at its own rate. Some faster than others so that the muscles that once filled out your thighs or arms now look like a loosening coil of rope.  Sinewy and stringy with empty voids where the muscle has completely disappeared.   A melting glacier with deep crevasse opening up to the surface.  Soft boulders of fat that once uniformly held onto those melted muscles now clump together and float across the sub skin landscape.  The skin loosens and drapes itself over the stripped bones looking like an oversized sweater.

    What does it mean for me? There are the obvious physical ramification.  My legs have weakened at this point that I cannot walk without use of metal braces to stabilize them and give them support. I use a walker to keep me from stumbling. My knees do not have enough muscles around them to keep them from hyperextending backwards. I’ve worn the tips off of numerous shoes as I do not have the strength to lift my feet and keep my toes from dragging.  Walking feels like a stroll against the current in fast flowing river filled with slippery rocks.  My walking pace has slowed such that I constantly have the theme song to the Chariots of Fire running through my head.  Many epic trips to the bathroom nearly ended in disaster.  Much frustration has boiled as I spend 10 minutes walking from one side of the house only to realize I left something on the other side.  So now I’ve resigned myself to using a power wheelchair.  Trying to get up out of the chair is a battle with gravity.  It’s amazing to discover how many muscles go into a subtle movement like trying to shift your position in bed.  How many times I’ve had to accept whatever position I’m lying in and convince myself that it’s comfortable because I can’t fucking move.  My arms have withered that a simple task like holding a book is likened to power lifting.  If I try making a stir-fry the constant mixing makes my arms tremble as if I was handling a jackhammer for an hour.  But the worst…  To lose the opposable strength in my thumbs… that which makes a human a human, that’s a tough one.  As I type this I have only one adequately functioning finger on my left hand.  Do you know how many necessary letters are on the left side of the keyboard?   (All the letters in the word “necessary” are on the left side, by the way) I no longer have the small motor skills to use a screwdriver or a can opener, a knife and fork or turn a frikin’ doorknob.  But the most frustrating is no longer having the finger strength to pick my damn nose!  Don’t even get me started on wiping my ass!

    What is not so obvious are the mental ramifications.  Look, I will admit that I was pretty vain about my body.  I felt good about my physical state as I entered my 50’s.  My weight was stable at 170. I wore the same size pants since my 30’s. I was doing yoga four times a week and my vanity had no issues taking a spot towards the front of the class. (Although I was not the guy taking off his shirt) I was swimming laps with my daughter twice a week. I walked numerous miles every week. Did highly physical construction work.  Damn! I felt great and thoroughly enjoyed the surprised looks when I told someone I just met that I was 50-something.  So much of my identity, what made me feel like a man, husband, lover, father, provider, builder were centered largely around my physical abilities. My hobbies and life were about  moving and using my hands.  I reveled in being a home owner who could remodel his own house.  Dig up the yard and reshape it. Being Mr. Fix-it or Move-it to my neighbors and friends. Take my family camping and play the role of great outdoorsman.  Having strong arms and hand to hold and caress my wife.  All that has been stripped away.  My manhood, activity, intimacy, helpfulness, and self-reliance… all stripped away.  With that, you can come to imagine my state of mind.  Imagine waiting for your spouse to help you dress.  Imagine constantly asking someone to carry your plate of food the three steps from the kitchen to the dining room.  Imagine having to ask a passing stranger to zip up your jacket. Imagine waiting in a public bathroom for someone to come along to open the door for you because you can’t.  Imagine being looked upon by the huge line of people waiting on you at the checkout because you can’t pull your debit card out of your wallet. Imagine eating dinner with some friends at a restaurant self-conscious of how you get the food to your mouth. That is my state of mind.  A loss of confidence. It is one thing to feel insecurity when climbing a mountain, it is another to feel it when stepping out of your house.

    As I write this it dawns on me that this is probably what most elderly people must feel. The frustration of looking back at yourself in the prime of your life. Wanting to still prove your usefulness, to be helpful and independent only to be betrayed by your body in its current state.  The fear and uncertainty of heading out into the world. So think about that next time you see an old lady holding up the line or the old man with a walker holding up traffic as he crosses the street. Instead of getting frustrated with them maybe give them a smile or even a helping hand. I can tell you they’d appreciate it.

  • chris-spott

    Member
    April 27, 2022 at 3:03 pm in reply to: How Has Your ALS Changed How You Exercise?

    I have have to constantly change my attitude, expectations and goals as my body changes.  This includes trying to keep up a positive spirit and not berating myself for not being able to do something I was able to do before.  I was an extremely active person prior to this disease. My exercise regiment was  primarily based in group activities such as yoga classes, swimming laps with my daughter and classes at the YMCA.  I was having issues starting in 2018, officially diagnosed in 2020 right when everything was shut down due to the pandemic.  I tried working out on my own only to swirl into a state of frustration with myself that I stopped exercising altogether. This in turn lead to depression and a feeling of hopelessness. It took me awhile to understand and accept what my body could and could no longer do. I also had two learn how to be kind to myself and give myself a break if I could not do something. (still a constant struggle)  I have only recently been able to create a light workout routine of stretching, light weights and yoga.  (There is a wonderful YouTube channel called Senior Shape Fitness that I work out to).  I have tried to get back to the pool for water aerobics that I thought quite beneficials, but can only go if I have someone to come along to help me dress.  Now that I cannot drive group activities are illusive.  So the goal is to keep trying to move without beating up on myself .

     

  • chris-spott

    Member
    November 16, 2021 at 8:22 pm in reply to: Sodium phenylbutyrate powder

    Can anyone guide me on  how to find Sodium phenybutyrate at these cheap prices.  I havent been able to track down anything under $5,000 for my prescription (3g 2x daily)?  Needless to say I have not been taking it.

  • chris-spott

    Member
    November 23, 2021 at 3:06 pm in reply to: Sodium phenylbutyrate powder

    True.  And given that ALS effects everyone differently how are these “results” measured is interesting.  I read through the various test results on Riluzole and Radicava before taking both.  The results seem pretty circumstantial at best yet they were approved by the FDA.  In the end, my insurance was covering it so I thought I would take it with nothing to loose.  I have been on both for a year and have continued to progress.  Slower? Who’s to say?