Hello everyone,

I apologize for neglecting this thread. Since this is such a rare disease it only gets activity every couple of months, and I honestly haven't checked it until today after receiving a private message from a gentleman.

I feel everyone's pain and now that many years have passed I feel I should provide an update. I understand everyone's concern about being diagnosed with this disease, and I too will admit when I first started suffering symptoms I was in a somewhat panicked state of mind. The important thing, is finding a way to stay positive. In the beginning, I let it consume me. I quit working out, being active, and being as social as I once was. I withdrew from people and only hung around my best friends and family. I remember my parents use to tell me things like, "You have a bad attitude. It's not that bad. People adapt. There are people who use their feet to do things. If it comes to that point, you will adapt." While that is not something anyone wants to hear, in a way they were right. After several years of my withdrawn state of mind, I finally just accepted it for what it was. It was not going to go away, and I still needed to live my life. The important thing to remember is, life does go on. Life is what you make it and people's perception of you is correlated to how you perceive yourself.

I underwent surgery in May of 2007. Looking back, I agree with some of the prior comments. I too (now) feel like my surgeon did not have the heart to tell me my muscles may never come back. After my surgery, I did regain muscle strength. I think it was partially from the muscle stimulator and from me wearing the neckbrace. After the neckbrace came off though, it slowly started to deteriorate again. After that, I think the muscle simulator only slowed the process down. Eventually my insurance quit approving my occupational therapy visits after about 2 years. I can't blame them, two years with little to no progress. The downside to that was I was unable to get pads for my muscle stimulator after that. Eventually once the pads I had went bad I just quit using it. I was still in a bad state of mind, and just didn't want to deal with it anymore. I am not sure if the surgery really helped or not. My hands use to get tired during strenuous activities which would force me to quit. After the surgery the tired feeling subsided, however it didn't stop the deterioration.

Once I moved out of my parent's house I finally started to become more positive and confident. I thank this largely to a co-worker who befriended me. He was always so happy and so positive, even when something was bothering him. His mentality rubbed off on me. People don't want to be around somebody who is miserable, and once I realized this and started making positive changes I noticed a change in people's perception of me. Sure, I can't do things like I once could however I adapted. I can still lift heavy things (although not solely using my finger strength), I could still ride my motorcycle, I could still get a date, I could still live. Dating is still pretty easy. Even with my boney hands I can still lure girls in with my personality -- it may take a little longer but I think it's probably a better relationship in the end because of it. I do not lift weights any more because I worry about my own safety, however I usually just tell people it's because of my back. I have a pretty big scar down my neck and upper back so they generally don't ask many questions. I still work out and make an effort to keep my body as healthy as possible but by doing push-ups, curls, and other exercises.

I will admit, you do lose a few first impression points when people notice something is different. When people shake my hand I usually just squeeze as hard as I possibly can to try achieve a 'normal' hand shake. Sometimes I get over zealous, dont leave my hand open long enough, and get my pinky trapped inside the hand shake since it is always slightly bent. People notice that haha. I am still very conscious of my hands and I generally try to keep my hands as relaxed as I can with as few hand gestures as possible during any sort of presentation. The look you get when people notice is always heart wrenching, but the important thing is to not let it effect you and still radiate confidence. There are, of course, certain jobs I can not get and family members did at one time suggest applying for Social Security. My father looked into it and it seems rather difficult to get this condition recognized and to actually be rewarded Social Security for it. I myself, am strongly against it and probably wouldn't have applied because I'd like to maintain any sort of normalcy that I can. I don't want to be labled, and I can still do many things very well. If anything it motivates me to try harder. I did give up on my dream to become a pilot, however I picked up my second love, IT, and have excelled with it.

The important thing that I would encourage everyone to do is seek medical assistance, accept treatment, and continue to live your life. Everyone has some sort of problem with them, some more severe than others but it's how you address your problems that will define you. In the beginning, I took the wrong route. Once I accepted it, I was able to enjoy life and focus on achieving life goals for myself. I know it's scary at first, but stay positive. You will find a way to make it through this!