Re: Centro-nuclear myopathy
I have an extensive database of 70+ types of muscular dystrophies. I didn't remember yours, but upon checking, I do have a little info:
AKA: Myotubular Myopothy
Short name: CNM
Mutant Gene: Dynamin 2 (DNM2)
Average Age at onset: Adoles-Adult
Muscles affected: Distal Legs & Respitory
Heart affected: ?
Lungs affected: Sometimes
You are not lazy! I am a 50 year old male with Limb-girdle MD. I was diagnosed at 41. I do all I can around the house since I left my job 6 years ago. Sometimes I go until I almost drop. Even then it doesn't seem like much. I cook most meals, vacuum, dust and do do small repairs. But I can barely stand on my feet at this point. I always feel like I'm about to fall.
Like my wife, your husband is trying to deal with this too. Hopefully he begins to understand. I've always felt that nobody, even my closest loved ones, can fully understand the fear and frustration of having this illness in your body from which there's no escape.
Exercise does not help people with MD. it just breaks down muscle cells that cannot be replaced (as they are in healthy people).
It sounds like you are doing an incredible amount. Good for you! Seriously. Post here whenever you need to vent or talk. There are many many good people here who completely understand exactly what you're going through.
Last edited by michigani; 06-24-2011 at 02:07 PM.