A hand shake-up

Every now and then CMT gives me a little shot right where I live. Ordinarily, life goes on and I cope daily transferring sideways from the bed to the scooter in the morning and then from scooter to toilet and back and then I work all afternoon sitting on my scooter and then transfer to the couch at night to watch the news, read the newspaper and watch Jeopardy. Then it’s back on the scooter for a couple of hours of catching up with friends and Scrabble before bed when I again transfer off the scooter into the shower and then bed and the cycle begins all over again. I’m used to this. It is my daily routine and the only way I can get around now as I haven’t been able to stand up for maybe five years and haven’t walked in over 10.

Those of you who regularly read this blog know that during the last several years I have been also losing the use of my hands. That’s what CMT 2A2 can do. I think I’m probably a typical 2A2 case and at 75 years old, I can’t expect things to stay as they were 10 or even five years ago. My wrists gave up long ago and I’ve worn a wrist brace on my left wrist for years.

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Wrist drop. I cannot lift my wrist

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With wrist brace

One night a couple of weeks ago I noticed that the knuckles on my left hand were aching and the next morning when I woke up my hand was swollen. Sure enough, shortly after that I noticed a marked decrease in hand function. That’s what happened with my right hand and unfortunately, even if I know what’s taking place, there is no way I can stop it.

Yesterday I bought a fork that wraps around my hand because I can no longer grip to hold a fork to feed myself. Isn’t that just great! I feel like I’ve been kicked in the gut because I’ve finally come to grips (excuse the lousy pun) with the fact that my left hand is almost as bad as my right one which has been pretty well paralyzed for the last two or three years. It’s never fun when reality hits and I’ll probably shed a tear or two in the shower sometime but I’ll live with it and hope that it doesn’t get any worse, although that will be somewhat of a miracle.

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It fits around my hand but I find it very heavy.

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To try to save what strength I have left in my hand first and foremost, I am dictating anything I can through my computer’s speech program. So far my voice, or should I say my new voice as I did lose it for several years, is holding out. I notice that if I don’t drink and become dehydrated my voice becomes ragged and intermittent. I will drink. I am addicted to Scrabble. I love the game and regularly play the robots online. Over the past year, I’ve gotten pretty good at it but I know that all the mousing one has to do to play Scrabble isn’t good for my hand. I’m wondering if they have a Scrabble game people can playing verbally.  Now that’s something some computer whiz could work on.

I’m having trouble brushing my hair because the brush falls out of my hand (I’ll have to get one with a hand strap like the kind they used to groom horses) and putting on makeup has been difficult but I’m using more thin, light brushes for everything as a brush is easier to hold and I can get a brush into the small pot of moisturizer or night cream easier than I can a curled-up fingertip. At my age, I shouldn’t be wearing a lot of makeup anyway because too much makes a person look older, especially if she is old. Something like trying too hard.

I haven’t written lately because I have been working on my autobiography full out and I have some progress to report: the book is written and has been proofed and edited (by someone else), rewrites done and then proofed and proofed again. I’ve had a professional graphic artist design the cover and I love it and, because it is an 8 x 10 large-format book that will be easy for CMT hands to keep open, it is conducive to photographs so for the last two months I have been inserting photographs into the text and now have at least 100 placed with underline as well as photo collages for some chapters. I’m trying to make it a CMT awareness vehicle as well as entertaining for those who don’t live with the condition. The book will definitely be out before Christmas because I have several others that I would like to begin in the new year – all concerning CMT.

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Amidst the thousands of photos and negatives I have dating back to the early 1900s and this is one of two tables

I’d love to hear from some of you who have lost the use of your hands. Tell me how you manage. If there is an upside to this, I’ll find it, but right now I’m hurting.

Huge hug to all,

Linda

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