Hey, My name is John.  I have Miyoshi Myopathy.  I started noticing a difference in my leg strength when I was 17.  I was used to play football and workout in the gym too.  I after I found out I had some sort of leg problem I would sit around school campus wondering, "Why am I the only one with this problem?"  My first doctor told me I had something else and said that I would never walk again.  You can imagine how upset I was to hear that.  I too have been depressed for a long while.  I still feel depressed but not as bad.  I'm 24 now and looking into a power chair.  I can still walk but it's becoming more and more difficult so I am planning ahead.  Voc Rehab can help with expensive medical equipment to keep you independent so keep that in mind if your condition gets worse.  I have noticed that my leg and bicep pains are worse when I don't have a steady sleep schedule with at least 8-9 hours.  If you want to try and lose weight, I have used weight watchers.  It works but it's a very slow process.  It's based on a point system and urges you to eat healthy.  You end up losing about 2 pounds a week.  It's very tough to stay on track though, eating healthy is no easy task.  I find myself struggling to stay on cause I love fast food and lots of it.  I'm 6'2" 200 pounds and according to my bmi I am close to being over weight.  I hope that helps.

Good Luck,

John

--- On Tue, 6/24/08, mmejia_28 <mmejia_28@...> wrote:

From: mmejia_28 <mmejia_28@...>
Subject: [dysferlin] Excersise- ???
To: dysferlin@yahoogroups.com
Date: Tuesday, June 24, 2008, 10:34 PM

I have LGMD2B, i was diagnosed about 4 years now (present age 21),
but lately the symptoms of the disease have become more and more
prominent and range from not being able to take the stairs to getting
up from a seated position. I am about 5'2'' and weigh 165lbs which is
about 40lbs heavier than when i was first diagnosed. The weight gain
came from being a bit depressed about the whole situation not only
because i realized i had a disease but because of the drastic changes
from having a very active lifestyle (runnning, soccer, any sport for
that matter) to not being able to walk very much which led to a
rather sedentary lifestyle. I have tried to get back to the gym but
when i do, i feel the soreness in my legs and i actually feel weaker
up to a week later. therefore i stop going because i am afraid that
the effects will be permanent and i will be yet another stage weaker.
However, i know that it is detrimental for my legs to be carrying
around all that weight so i NEED to loose it somehow, thus my
dilemma. I was wondering if anyone was going through a similar
situation, any tips, help, opinions, anything! Also, did anyone have
serious aching in their muscles as a child or presently? This usually
happens when the day and i are winding down and i am in bed ready to
sleep, but get disturbed by the aching to the point where i need to
get up and move a little (and i have a high pain threshold).

ps. if you've made it down to here, sorry for the life story but
thanks for reading and i would really appreciate any replies. Thanks!

- Miriam