Hirayama's Disease

[Jacob91]

Hi everyone. I posted on this thread a few years ago and unfortunately my hand has not gotten better since. I have been able to adapt well enough to play video games rather well and I do so quite often to keep the strength up in my hand, but it only seems to slow down the progression of the condition getting any worse. It seems to be stable for the last year or so with the odd tremors and sensations and the sensitivity to cold, but thankfully has not been getting worse due to my constant use of my hands.

However, I wanted to share with everyone that there is hope for those of you suffering from this condition. For many people who suffer from hirayama's disease, the paralysis involved is actually a learned paralysis that is taught following trauma or extension of the nerves stemming from the brachial plexus near the cervix region of the spine. I saw a wonderful tedtalk by a doctor named ramachandran who invented a very affordable and genius solution to treat this type of paralysis. It involves using an illusion to "unlearn" the paralysis associated with this condition. It is very simple and affordable to virtually anyone, and from many case studies appears to work better than physical therapy even after as little as one session. It involves creating a "mirror box" in which you place the affected hand in a box with a mirror facing the unaffected hand, then move the unaffected hand in a way that your affected hand cannot, focusing on the reflection. Some people notice new mobility immediately, while others take a bit more time to make the needed connections to allow for new movement. This technique is often used to alleviate phantom limb pain, but it works in a similar fashion with monomelic amyotrophy. Unfortunately this technique does not work for bimelic sufferers, but great progress has been made on that front medically. I read that a group of doctors in finland have been able to successfully treat both forms of amyotrophy with great success - something that wasn't possible only a couple of years ago. At the rate advances are being made, hopefully those of us who have lived with this condition will be able to get appropriate treatment of one form or another before too long.

Here's a video explaining how one can create and use a "mirror box" to unlearn paralysis by illusion therapy for about US 5$. I recently stumbled upon this and I'm anxious to try it out for myself. I'll keep everyone posted with the results as they happen, it seems that there already have been hundreds of cases successfully treated in this manner. So keep your hopes up everyone! I share your pain and I believe that it will get better before long one way or another.. even if it means we must wait for the advent and implementation of bionic implants. Let me know if this was any use for you!

Link to video - https://www.youtube.com/watch?v=gHFOkVakRkw

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Hi courtney, first of all I would like to say that it must be very difficult being a parent and hearing of such a diagnosis. Being one that has lived with this condition for several years now, I have many things to tell you that should put you at ease. With maintenance and regular use of the hand, the condition will arrest (meaning it stops getting worse) shortly after symptoms appear in many cases. Before I got diagnosed I was a competitive gamer, and I was devastated as I thought that I would be unable to continue doing what I loved. However, thankfully I have been able to remain successful in playing games despite my condition, and I even have dozens of world records that prove that this condition can be overcome if one does not let it affect them negatively. I was at one time quite depressed because of my condition but I have learned to do everything that I would be able to do otherwise without my peers even noticing oftentimes that I have such a condition.

I worked as a cage cashier at a casino for about two years and was able to perform my job quicker and more accurately than many others who I worked with.. even after being around them daily for over a year, no one even noticed that anything was wrong with me - they were quite surprised to hear that I had such a condition. It isn't an effortless thing by any means to overcome, but it will rarely get in the way of a normal life. The most difficult thing I have to deal with anymore is buttoning my pants - but something so minor isn't something that isn't adapted to reflexively. Although there have been times when I was worried that such a condition would affect my love life.. being self-conscious of it has affected it much more than the actual impediment itself. Also, you might look into the very inexpensive mirror box therapy that I mentioned in my previous reply. I have heard many great success stories using this technique and it's so easy to make and use that I highly recommend trying it - it's definitely worth a shot. Also now that we live in an age of ever rapidly advancing technology, bionic implants that mimic natural dexterity are already available and are set to become much more commonplace within five years to a decade, tops. And that may be the worst case scenario, as in just the last couple years successful treatments have been reported much more often than ever before.

I wore a neck brace briefly and unless your son has severe cervical flexion, I wouldn't personally recommend it - though I'm no doctor.. (but I do know a lot more about this subject in particular than many doctors, and am studying to become one someday). Having a neck brace is something that carries a psychological stigma for the wearer that might convince them that they are unable to influence the progression of their condition otherwise, which is only true in the most severe of cases.

I can't give much advice about being a parent, but if I can say anything it's don't coddle him so much for it. I hated having my family treat me and talk down to me as if I was disabled.. I know it's hard not to try to console him and accommodate him, but do so according to his own problems so as to not make him feel more as if he is disabled. If I am any example, I promise that even with severe atrophy, the condition can be overcome and a normal life can be led.

I hope this helps. Feel free to ask as many questions as you want, I'm more than happy to provide any input that I can on the subject.

[Shuntsman]

Hi everyone I would like to talk to you about Hirayma's Disease with you. My doctor says shes 90% sure I have Hirayama's Disease but they can't find anything in my MRI'S every thing is normal. And I have to wear a neck brace. I'm 17 years old and it started when I was 16 so it's been going on for 1-1/2 years. I have weakness in my right hand and it shakes and I have muscle wasting. It is also hard for me to write with a pencil and use my hand. And I was wondering if I can talk to you guys about your experience with this disease because I don't know anyone that has it. If you would like to email me at [email protected] or on this website ( but I really don't know how to use this site) I would really appreciate it. Thanks.