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Over-excersize, strain- or work injuries.
Hello hello.
I thought to look for ideas/advice here… It so happens, the doctor who diagnosed me is not simply available, and otherwise my condition is currently a secret for a good reason. But hey, maybe someone else out there could relate?
Basically, my hands are where my sma iv mostly manifests, and I ~might~ be observing it worsening due to work strain.
I could understand degradation due to coordination overuse – e.g., in the past I tried to persist playing guitars, and the intensity of neural effort probably exceeded my motor cortex adaptation, so I could see it getting worse as I pushed myself. But I thought I was reasonably safe doing hard manual labor, because it doesn’t really need lots of nuance coordination? It’s tough times at my slave pits, and I’ve been literally mining hard rock for days. Can this kind of abuse possibly interact with SMA?
Regardless of my current workplace situation, physical outdoor work is my priority, as in, one of the last things I want in life. Neither I nor the doctors could predict future course of my sma, so I went on aiming for my goals while I could. Now I have to think about it again. It’s almost surprising already that nobody notices (or asks?) about my hands, but if things keep going this way, I don’t know how I’m going to persuade employers.
Thanks for tuning in!
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4 Replies
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Alex, although I can’t exactly relate (my SMA is obvious) I can relate to trying to disguise weakness. Most people are actually surprised when they realize how little strength I really have. In my opinion keeping active is a good thing, but I would be careful in not overdoing it. From my experience it takes longer to rebound and sometimes we don’t rebound 100%.
My best advice is to continue to do what makes you happy. You might have to adapt certain aspects, but one thing I know about SMAers is that we’re innovative. Focus on what you can do not what you can’t. It’s also okay to ask for help once in a while. Most people are more understanding than we give them credit for sometimes.
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Another type iv here. I can relate to your guitar troubles. My bug a bear was the piano. I could never get a gentle touch.
As for hard physical labor, I did that as a young man into my thirties, and I don’t think it did me any harm; in fact it probably helped keep my legs stronger. But as time passed it became less and less possible.
I’m not sure what the effect you’re seeing in your hands actually is. I have a pronounced tremor. But overall it’s my legs that are affected.
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Hey, thanks for your input people!
Jeremiah, I’ve got visible tremor, larger amplitude involantary twitches, cramps. My indexes & thumbs are the only fingers with the full range of motion, while others recently started getting totally and helplessly stuck clenched in. So I wondered if that was a coincidence, an injury, or an interaction of factors, etc…
Have you observed gradual change or fluctuations? I potentially had some fluctuations before, but the more severe of them could have been frequent cold exposure + psychosomatic. All i can is speculate 🙁
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Hi again Alex,
I’ve always experienced involuntary twitches, but my hands are OK except for the tremor. I only occasionally have cramps, and I believe my Spinraza treatments have eliminated those, knock on wood.
With me it’s always been my legs that are weaker than my arms and hands, so I can’t give you advice about your fingers.
For me, the changes have been gradual, with a slow deterioration throughout my adult life. I’ve never experienced fluctuations, except now that Spinraza is available, I do seem to get a little weaker when close to my next treatment, after three and a half months, say. I was able to do real physical work for quite a while, but no longer. I can still stand and walk unaided, but with my quadriceps completely shot, it’s more a question of balance than muscular control.
– All best, Jeremiah
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