Thank you for telling me so much about your experience. It's the sort of information that I'm trying to pry out of the doctors I see and am still not getting.
I was slowly losing hand function over the course of 25 years. In 2016/17, I took tamoxifen for 15 months, and abruptly lost about 30% of the function in my hands. Since then, I've worked with a hand specialist OT. There's no way at all to restore the function I've already lost. There's also no way at all to exercise my hands to prevent further loss. I've lost about another 20% of my function in the last 2.5 years, mostly due to pain bad enough that I can't keep using my hands.
One of the things I'm trying to find out is what the likely progression is in terms of future loss of function if things go on as they have been. I know that I'm going to lose the function eventually if we do nothing at all. That's pretty clear.
I also want to know how much worse the pain will get with the ongoing loss of function. I can't take most painkillers, so pain levels are a big concern, and the pain has been getting worse over the last three years.
So I want to know the odds of the surgery stabilizing things versus making things worse on several different fronts. If I'm going to lose another 30% of my function in the next 5 years anyway, then gambling that much for possible pain relief (or just the pain not getting worse) might be worthwhile if the pain relief lasts at least that long. I'm not expecting that surgery would necessarily give me back any of what I've lost and assume that, even if it did, I'd lose something in return.
Nobody's willing to give me that information. Also, nobody's willing to talk to me about what to do for help when I'm at home alone for 8-12 hours and can't do necessary life maintenance stuff. I'm not there yet, but I expect that I will be, probably in less than a decade.
I'm not trying to get surgery ASAP. I just feel that I'm facing a chronic and worsening issue without being able to get anyone to talk to me about it. Are there local organizations that provide support services? How much does it cost to have someone come in and help me wash? How would I find a person like that? How do severe essential tremors interact with limited hand function over the longer term?
The hand OT people weren't very helpful. They kept offering me solutions that made things worse because the intersection of the hand pain and the tremors wasn't one they knew how to address. They also offered me a lot of solutions for problems they thought I must be having that I wasn't and still am not. The suggestions for things that I asked about specifically would require that I move to different house with a larger kitchen and have someone to clean all of the gadgets after I used them.
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Re: TL;DR
Date: 2019-11-14 12:26 am (UTC)I was slowly losing hand function over the course of 25 years. In 2016/17, I took tamoxifen for 15 months, and abruptly lost about 30% of the function in my hands. Since then, I've worked with a hand specialist OT. There's no way at all to restore the function I've already lost. There's also no way at all to exercise my hands to prevent further loss. I've lost about another 20% of my function in the last 2.5 years, mostly due to pain bad enough that I can't keep using my hands.
One of the things I'm trying to find out is what the likely progression is in terms of future loss of function if things go on as they have been. I know that I'm going to lose the function eventually if we do nothing at all. That's pretty clear.
I also want to know how much worse the pain will get with the ongoing loss of function. I can't take most painkillers, so pain levels are a big concern, and the pain has been getting worse over the last three years.
So I want to know the odds of the surgery stabilizing things versus making things worse on several different fronts. If I'm going to lose another 30% of my function in the next 5 years anyway, then gambling that much for possible pain relief (or just the pain not getting worse) might be worthwhile if the pain relief lasts at least that long. I'm not expecting that surgery would necessarily give me back any of what I've lost and assume that, even if it did, I'd lose something in return.
Nobody's willing to give me that information. Also, nobody's willing to talk to me about what to do for help when I'm at home alone for 8-12 hours and can't do necessary life maintenance stuff. I'm not there yet, but I expect that I will be, probably in less than a decade.
I'm not trying to get surgery ASAP. I just feel that I'm facing a chronic and worsening issue without being able to get anyone to talk to me about it. Are there local organizations that provide support services? How much does it cost to have someone come in and help me wash? How would I find a person like that? How do severe essential
tremors interact with limited hand function over the longer term?
The hand OT people weren't very helpful. They kept offering me solutions that made things worse because the intersection of the hand pain and the tremors wasn't one they knew how to address. They also offered me a lot of solutions for problems they thought I must be having that I wasn't and still am not. The suggestions for things that I asked about specifically would require that I move to different house with a larger kitchen and have someone to clean all of the gadgets after I used them.