hey guys,

i just wanted to reply because i have recieved a few emails over the last couple of months about this.

i did undergo my surgery and have been going to occupational therapy for the last 6 months or so. the doctor told me he thinks he solved the problem and i will give him some credit. before, my hands got tired very fast with any sort of activity. i couldn't even finish a song on guitar hero becaues of it. i can now play for quite some time with out them getting tired (maybe 30-45 minutes)...clumsy, but not tired which is odd because even my friends' hands get tired after a few songs. along with that improvement, i have also gained some muscle back on the outer pinky finger. im not sure of the name but my left hand has recovered some of it. don't get me wrong, it is by no means back to normal and my hands are still rather bony, but it is improvement none the less

unfortunately those are the only improvements i have noticed. at occupational therapy they do measurements every month or so and it shows my hands are still loosing strength, slowly but surely. i have lost almost all the muscle between my index finger and thumb in the left hand as well which makes it very hard for me to bend my index finger fully. my therapist is trying to e-stem it back. (i think this is how she got my muscle back on the outer pinky) i'm not sure how the e-stem really works but if it DOES work i will be one happy camper! also, i have developed a twitch in my left forearm that comes and goes, i am hoping it is a sign of muscle growth however though i believe my grip strength last time was 4 pounds in the left hand and 25 in the right.

besides that not much is new. im stilll hopin things get better but in the meanwhile ive been tryin to live life to the fullest and get the most out of it. it is rather depressing when you have no control over your body, but i think the best thing to do is try to continue living. ive probably done more fun, crazy things in the past 6 months or so than ive ever done. you just have to try to stay positive

i wish everyong the best of luck and i hope you guys had a good new years! also if anyone has anything theyd like to share feel free to post. there really isnt too much information on this on the internet and a lot more people are effected by it than i realized.