Appreciate your response...........kudos to your determination and outlook.
I swore I wouldn't talk about it to anyone I knew personally (or even on the net) about mine as some have a way of treating you differently when they know.
I have been diagnosed with a very, very slow varient of MD (Limb Girder).................although syptoms varies in degrees with different individuals...........I would have to say fatigue is the primary "junk" I deal with. It was a long process of finding this crap out......repeated CPK counts, repeated EMG's and two muscle biopsies "ms?".
Also, EMG's continue to show two different processes - one of which the doc's aren't sure about. Brain MRI's have shown over the last three years increasing number and sizes of lesions in the Right Frontal Lobe....................having the doc's "suspecting" MS as well. Recently had a lumbar puncture whereby spinal fluid was drawn for examination giving a definitive diagnosis of MS (in addition to the myopathy) or ruling MS out. I'm waiting on the results as the samples were sent to some lab.
I'm like you, the stuff slows you down - but hasn't stopped me either....................life's too short for anything else.
I guess I was pretty lucky, in the sense that my MS diagnosys was obvious from the start. Luckily, I was diagnosed early, after only a few episodes.
The part I hate the most about all of it is that damn dagger over my head. That's why I decided that as long as I could jump, climb, snowboard and do whatever else I do, I would make the best of it!!! I think outlook has everything to do with it, man.
However, I have to go for blood tests every month, and I take medication that require me to take a shot three times a week. Those are the moments that make me feel like "i'm sick". It's frustrating sometimes.
You say that people treat you differently. You're right. It's happened to me too. I don't hide my condition, but I also don't publicize it if noone asks. Being a recovering addict also, I understand the value of anonimity! I had to tell my mother to stop referring to me as "sick" all the time. I told her that I have a "condition" with an impact on my life, but I'm only "sick" when i go into a relapse, which is not the case right now. Work was a problem for awhile, specially when I took a month off to recover from an episode, but because I really haven't made a big deal out of it, people seem to have "forgotten" and I get to be slammed just as hard with work as the next guy!!!!! I try to keep my "disabled" trump cards for when i really need them...
And the fatigue is a pain in the asssssss!!!!!!!!! I would go to the DZ this summer, do one jump, maybe two, and I would have to lie down for three hours. It's better now that I'm on the meds though. I find that Vitamin D helps also for me, but I'm basing my "personnal research" in this particular vitamin field on unsubstantiated medical research.
All I can say is hang in there, man. Keep doing what you do, and keep being grateful for it. Progressive conditions suck, because you know that the inevitable is coming at some point, but when that time comes, i want to be able to say that I've done as much of what I wanted to do as I could!
I think it's great that this forum has attracted other disabilities I hadn't thought of originally!
I'm reminded of a skydiver named Alex Barnes. He had a condition I think is called Neurofibromatosis, though I'm not sure of the spelling. It caused tumors to grow throughout his body, but mostly around his spinal column and brain. He was a hard core jumper through the 1970s and early 1980s. He started feeling the effects of his condition in the mid 80s when he started losing his hearing, and then his balance. He would get thrown out of bars completely sober, much to his annoyance. He kept skydiving through the 1980s and early 1990s until he could no longer do it safely. He was one of those who enjoyed life no matter what cards he was dealt. His friends at Skydive Orange, VA all remember him fondly.
I am sure there are others out there, and hopefully this forum will bring them together so they know they are not alone.
Hi Billy - thanks for the story concerning Alex..........it does sound as if he enjoyed life and skydiving - as long as he could.
I hope this forum will bring more of us together as we "neuro" guys are a small lot lol.
I was looking through my files for the eulogy given by one of Alex's best friends. I found it and thought you would enjoy reading it. He passed away in August 2001, just 3 weeks before the first Deaf World Record.
Blue Skies Billy
Most of you probably never got to meet Alex, as his medical condition has kept him away from the DZ the last few years, but you probably heard the stories, as he was without a doubt the funniest person ever to frequent the DZ at Orange. Alex never let anything stand between him and having the most fun possible. Not danger, not logic, not reason, not the law, not a bunch of pantywaist pussies, not ANYTHING! Alex made his first jump at Orange in 1977, and was the first student ever trained after the move from Buckingham to Orange. He had a lower D license and Gold Wings number than me, "AND ALWAYS WILL! AND DON'T YOU EVER FORGET IT!" A static line jumpmaster, Alex once put out a student on a ten-second delay, then shouted after him in his gravelly voice, "PULL THE FUCKING STRING! AND DON'T SUE ME, PRICK!"
Alex suffered from neuro-fibromatosis, which causes tumors to grow throughout the body. Early on it caused him to limp, later it cost him his hearing and confined him to a wheelchair. He never let that stop him from skydiving, however, until he simply no longer had the physical strength to jump safely. Alex's limping and balance problems used to get him thrown out of bars while he was still completely sober, much to his annoyance. On a crowded Saturday night at Betty's, after we had gotten seated in the back amidst a large crowd of large local women, he leaned over the table and remarked in a too-loud voice, "Nice crop of corn-feds in here tonight!"
He had more cutaways than Ric Dennis, packed those early scary squares without a bag and using the "coil of death", and jumped as many times in a day as he could haul himself to the plane. I am sorry for all of you who came along too late to know Alex, for you have truly missed someone special. He will be missed.