r/HirayamaDisease • u/Candid_Ad_990 • Jan 19 '26
25 Year Old Male, Diagnosed with HD age ~17. Curious if anyone has had success rebuilding some muscle in the affected hand
Hey everyone, I’ve lurked here a bit before but made this new account just to share my experiences and learn from experience of others.
Quick background on me: I’m an ethnically Armenia male born and raised in California. Around age 16-17, I began noticing severe hand weakness in my left hand. Initially I thought it was something like Carpal tunnel but eventually was diagnosed with HD. No symptoms in right hand thankfully. The onset was a pretty scary time as I imagine we all experienced. I also played a lot of video games and used my phone great deal then, so I wonder if that exacerbated things. I remember then not was my hand very weak but I also experienced hand tremors, which I think happened because I would try overusing my hand. Once I accepted the situation and began being careful how I used it, the tremors at least went away.
Since then, I’ve been fortunate enough that this doesn’t impact my life greatly. I work as an engineer, I do sports like running and even some weightlifting, although I’m very limited in what I can do pull-wise (have to use a strap and can maybe do 4 pullups in a row on a good day).
I have not tried much to rebuild muscle strength in my hand up till now as from what I understand it is pretty futile. The part of my hand between my index and thumb has no muscle, it feels basically flat, in stark contras to my right hand. That said, I’ve been curious to give it a try because what’s the harm I suppose?
I’ve bought a hand grip strength measuring tool, and want to experiment with doing some hand exercises and see if I can achieve some progress. I expect most likely no improvement but like I said, am curious. Has anyone tried with failure/successes?
Edit: One more thing I’m curious is if anyone has found ways to mitigate the effects of cold on the hand weakness. This is probably the biggest limitation I have. If I’m not careful and let my hand get too col (eg when I should have worn gloves), I literally can’t tie my own shoelaces. Quite a frustrating experience.
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u/Tuffy-the-Coder Jan 19 '26
Please update your progress here. It gets really frustrating during winters, especially when I have to ride a non-gear bike, as my left hand becomes almost useless. I have a few questions:
How did you manage to get rid of hand tremors? I’m quite affected by this. It doesn’t impact my daily life too much, but when I’m out with friends it becomes very noticeable. There was a time when a friend handed me his phone to record a video, but my hands just kept trembling, both right and left.
You mentioned you can do up to four pull-ups, but even one feels impossible for me. My doctor advised avoiding heavy lifting, so I’ve stuck to push-ups, squats, and leg raises at home. I tried using straps, but they didn’t help much. Is there a specific way to make progress here?
There’s a clear strength difference between my left and right hand. Do you adjust your exercises, like dumbbell curls, to account for this? I feel the difference becomes more noticeable as I progress.
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u/Glad_Cockroach_2490 Feb 14 '26
For hand tremors, try to not do neck forward flexion i.e., chin to chest movement and maintain slightly elevated or neutral neck position in a day. Follow it regularly, for me doing this reduced hand tremors by a lot.
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u/Candid_Ad_990 Jan 21 '26 edited Jan 21 '26
Regarding winter, I've been very fortunate to live in a very mild climate in California. I've been interested in living on the East Coast (NYC/Boston) for a few years but the winter is probably one of the things I would seriously dread. I will say that based on the responses here, I imagine I probably have a lighter form than others, particularly in that only my left hand is affected. (Right hand seems to have occasional flare ups of overuse, but my neurologist has told me that appears to have nothing to do with Hirayama, rather maybe RSI).
- I think I only had hand tremors often during the first few years, when I struggled to adapt. I think the issue is I would push my hand beyond what I would do in various ways. For example, I would use my phone in a bad pose, or try to play video games with a controller (where in both cases it would really strain out my thumb, which is already incredibly weak). It seems that I have a small "budget" of how much I can use my thumb, and if I overuse it and don't listen to the warning signs, that's when it starts hurting and having tremors. I think keeping good posture, doing stretches, etc, has helped reduce this. It's hard for me to say confidently what helped because I don't actively experience it now, but if I felt it coming back, I would assume it is overuse and would be very careful for the next week.
I'm not sure from your post whether you are saying that both hands are affected? Because you say your right hand is much stronger but it also experiences tremors?
I think I'm able to do them only because my right hand is basically fine and can compensate a fair amount. I also have remained pretty physically active since even before the disease began (I think I was already going to gym but not sure tbh...maybe I began after). So I think I have decent arm strength and a strong right hand grip. So, the weak link is basically how long my left hand grip can hold out before failing. Without a strap I'm not sure I could do a single one. I had to figure out a good way to use the strap, maybe I can take a picture later. But I basically something like this https://www.amazon.com/Gymreapers-Weightlifting-Bodybuilding-Powerlifting-Deadlifts/dp/B07BB3VQ42/ref=sr_1_1_sspa but not that exact product. I put it on my left hand, and wrap the strap around very tightly on the pull-up bar, to where it basically allows me to not rely on my left hand grip strength. Note the direction of wrapping is very important, it should be such that if your hand falls from the bar, the wrap should stay tight (bc it has to unwrap in the opposite direction).
No I decided that I'd rather keep my arms balanced and not try to develop my right arm more. In theory I could, but it would be annoying and also probably just look weird. I'm able to do enough with my left and right arm equal that I can still maintain a good but not crazy build, and once I hit the limit of what my left arm can do (which I mainly experience in pull, not push), then I accept that. Given this I don't really try to push gym anyway, I do more running/biking other sports. I think the farthest I've pushed is probably ~145 pounds bench (but didn't feel a limit, probably could have developed more if I wanted), 15-20 pound shoulder raises (with straps), and 20-25 pound bent over dumbbell rows. In each of the latter two, I really feel the limitation of my left hand at the upper limit, and can only do it barely with the straps.
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u/TraditionalWeek256 Jan 19 '26
Sorry, this is not answer to your question. It is surprising that non-Asian has this. Armenians are caucasian, right? It is an even rarer case, I guess.
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u/Candid_Ad_990 Jan 21 '26
No worries at all, I included that information for a reason. I have been curious about this and recall even asking the neurologist who diagnosed me about it.
Armenians are kind of on the border of Europe/Asia/Middle East. I don't know genetically who we are closer to so I'd be curious if anyone is more informed on that. So not sure if I'm just the rare exception or if we have a similar enough genetic mix to be higher risk along with other Asian populations?
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u/TraditionalWeek256 Jan 22 '26
Thank you for sharing your story.
In my case, I can’t do many sports except running and swimming. My symptoms are mostly in my right arm, but according to my doctor, my left arm isn’t safe either — if I rely on it too much, it may develop the same issues. It affects my right side more because I’m right‑handed. My leg is also mildly affected, so swimming is really the best exercise for me.
I avoid cold environments completely. That’s one of the reasons I had to leave my home country, which has very harsh winters. Now I live somewhere without sub‑zero temperatures.
All we can do is adapt and keep going, hoping that someday a cure will be found.
All the best!
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u/theawkguy Jan 20 '26
Hello, we have very similar experiences: I'm 24M now, and was diagnosed with HD at 16. I noticed a loss of strength in my right hand in school, and my hand would suffer from spasms when trying to write. I also have essential tremors which get worse as I get more anxious/stressed. My fingertips are often cold. I was recommended physical therapy using some grip-strength exercises but I got frustrated by it as it seemed like i couldn't even move it, and wasn't making any progress. The weakness progressed through some years, eventually stabilizing to where it is at rn. I noticed a similar limitation with pull-excercises in the gym, my upper arm was able to lift more, but my grip strength would give out before i ever near that limit. Over the years, i kept visiting neurosurgeons to enquire about any new research/solutions -- there is a robotic surgery to reduce the compression in the neck (C3-C6) which will prevent further denervation/muscle loss; this should be supplemented with physical therapy to re-educate the muscles and regain strength. Through the past half-decade I have been taking supplements/vitamins for nerve health and beta blockers for the tremors. Recently I have refocused on treating HD, and have been following the physical therapy excercises -- Neck ROM, Isometric movements (except flexion), Neck extensions. In addition to this I have been trying out NMES (Electrical Muscle Stimulation) to re-educate the affected fingers. I have noticed some improvement in grip strength, though since its only been 2 weeks, i cannot back that up with sufficient evidence. Finally, i have not found any solutions for the winters. I live in a very cold place, so winters are horrible for my hands. You may want to look into wearing gloves to keep them warm.
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u/Candid_Ad_990 Jan 21 '26
Hey man, thank you for your comment. I have never considered supplements/vitamins for nerve health, is there any resources you would recommend for learning about this?
Very interesting about the NMES (which I have not heard about until now) and the PT exercises, good luck! Are you doing this on your own or with a doctor/therapist involved? Would be very curious to hear how this progresses for you, I hope you're right about the grip strength improvement. Have you considered getting a tool for measuring the grip strength?
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u/theawkguy Jan 21 '26 edited Jan 21 '26
I will find some resources, I only took the supplements that my neurosurgeon prescribed to me; to not give incorrect information, I will not name the medication as they differ from country-to-country (even brands), so I will list their compositions below. One thing they constantly checked was my Vit. D3 and B12 levels.
NMES is NeuroMuscular Electrical Stimulation. Essentially, you shock your motor neurons (different from TENS which works on sensory neurons to reduce chronic pain) into doing the motions and re-educating them; since I have muscle loss for my pinky/ring finger region, i have very little ROM.
Starting next week I will begin tracking my forearm circumference and palm thickness to track progress. I have been looking into measuring grip strength -- do you have any recommendations?
Edit: here is a paper that studies the role of vitamins in neurodegenerative diseases:
The Role of Vitamins in Neurodegenerative Disease: An Update - PMC https://share.google/0z14RHKRlUUumRk1H
Composition 1: Tocotrienols, Ubidecarenone, Benfotiamine, L-Carniine L-Tartrate, Methylcobalamin, L-Methy/folate, Pyridoxal-5-Phosphate, Choine Bitatrate, Ginkgo Bildiba Extract, Lycopene & Omega-3 Marine Triglycerides Tablets
Composition 2: Mecobalamin, Alpha-Lipoic Acid, Pyridoxine & Folic Acid Capsules
Composition 3: Cholecalciferol Softgel Capsules U.S.P. 60000 I.U.
And of course for my tremors: Composition 4: Propranolol
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u/Careful_Tie_377 Jan 20 '26
NMES, do you use it at home @theawkguy
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u/theawkguy Jan 21 '26
Until now i had been using it at home under the supervision of an on-call physiotherapist. I did end up purchasing my own, and will be asking his recommended settings and electrode placements.
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u/herefortrees Feb 13 '26
My dr told me i could not regain the muscle. It doesn’t get nutrition anymore. But my other fingers in that hand are stronger than normal now. Just gotta compensate for the weakness.
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u/NorthAd4961 Jan 19 '26
I’m 64 years old and had HD symptoms since I was 18. At the time my symptoms manifested, neurological diagnoses were limited and I was diagnosed instead with polyneuropathy. However, a decade ago a neurologist from the University of Miami diagnosed me with HD. He basically said he could not pinpoint the cause, and that he only matched my condition to the symptoms of HD (e.g. asymmetric muscle degeneration in the hands with an onset in the teens, possibly not degenerative).
I’ve been living the last 47 years exactly as you’ve described. I live in southeast Florida, so it’s only cold one week or two out of the year, but when the ambient temperature reaches 65° I cannot move the fingers on either hand, and both hands ache noticeably. I have no strength to pull or hold a weight of any kind. I think the issue is really what I was told about neurologists - they “diagnose” and then say “adios!”. None of the neurologists I’ve seen over the last several decades provided any guidance on whether my muscle weakness is degenerative or if the muscles can be strengthened.
I will suggest though, that you should continue exercising your limbs, because otherwise the adjacent muscles will weaken. I swim (using forearm-length paddles) and it really helps to preserve overall upper-body strength.