Family Stories

Curt's Story (Adult Onset CPT 2)

Living With a Metabolic and Neuromuscular Disease (fiber atrophy 2)

Hello, my name is Curt and I have been a member of the FOD Group for about 4 months now and really enjoy reading your postings. Well let me tell you a little about myself. I'm 36 and live in the Adirondack Region of upstate New York...although I was born and raised in North Carolina. I was a Sauté Chef for most of my life, well at least 16 years worth. I had to "retire" in 1998, two years after my diagnoses of CPT 2 and fiber atrophy 2. That was probably the hardest thing to accept…cooking was more of a passion than a career for me. I've always been an outdoor type person from the time I can remember, always climbing trees and such. My health was what I had thought to be great growing up. As a kid I was always very active, boxing from the ages of 12-18, hiking/climbing...just doing the things that kids do. Don't get me wrong, I had my complaints of aches and pains...but they were always contributed to "Growing Pains"… don't you hate that?

I spent the better part of my life thinking that I was crazy and I'm sure I'm not the only one. Talk about emotions going haywire…I can tell you stories there. I mean when no one will listen, listen with not only their ears, but hearts as well, you have a tendency to get a tad bit angry. "Am I crazy?" you ask yourself, thinking if this Doctor of 30 years can't find anything wrong, well...perhaps it is in my head. I still pushed on with the way I was living my life, doing the same things that I've always done, but a price was to be had, and it hurt like hell too. I still try and enjoy the same activities that I have always had a passion for, but I've learned to take it easy and go slower if I need to.

Having both a neuromuscular and metabolic disease my symptoms vary: I get severe leg cramps as well as having my sides cramp up, kind of takes my breath away for a moment if you know what I mean. I also experienced "Rhabdomyolysis" a few different times, but never felt it was serious enough to go to the hospital. At times I find it hard to muster up the energy to do even the simplest of tasks...just no energy.

As for my neuromuscular disease, well the symptoms are slightly different. I still cramp up at times, but I'm also losing muscle cells...which makes it a little harder to do some things. My gait isn't the best...I'm like a "Weeble Wobble, but don't fall down." Thank God my fiancée is a Registered Nurse. I am currently taking a creatine supplement, trying to eat the proper foods, and avoiding too much exercise.

I guess if there was a reason for me to have these diseases I'd have to say to make me more compassionate, to understand others…after all we're all human. As strange as this may sound…I'd never want to be cured (normal). I now see life through a whole new set of eyes, and I'm happy with what I now see. Thank you for allowing me to ramble on.

Curt Vose
New York
www.bearphotoimages.com
curt@bearphotoimages.com