I also created a LGMD facebook site for those of you who have LGMD. Go to www.facebook.com and in the search box type "Limb Girdle Muscular Dystrophy", you'll also see (Beyond Labels & Limitations Inc.) after LGMD, this is my non-profit organization. I created this site so people who find me through my website know I also created the facebook site, and also for people from all over the world to share what information they may know. Thank You.

John, I am very happy to see you doing these videos, I live in the UK and I have been diagnosed with LGMD 2i. I have trouble walking upstairs and getting off the floor. But I can manage to walk for miles.

I have 2 questions for you John.

A) I've not been prescribed an medication. Have you been recommended any supplements / anything to help your strength?
B) My illness is not as developed as yours, but I am fairly bad going up stairs. Do you or anyone else, know of any good cardio exercises I can do, that you know helps?

John, i'm so glad to see these videos up and i have visited your site. . .thank you for sharing yourself with others. I was diagnosed with congentital muscular dystrophe after birth and most of my years were tough..or so i thought. . these last 5 years i have gotten weaker, i have been walking with a cane but to be honest i dont really go too many places becuase it's gotten so hard for me. . needless to say that alot of this is due to a lack of activity after i took an office job. i am no longer working so i have spent the last year trying to get stronger. .it's pretty f'n tough. but the biggest problem is that the only time i was able to connect with others like me was camp...as an adult, it's way more difficult. .so i thank you again for sharing yourself.

Hi John. Thank you so much for documenting your life with LGMD! I am 36 and also have LGMD (though not certain which subtype). I was diagnosed at the age of 4 and am still ambulatory without assistance. I have seen decreases in strength over the past 10 years but also have seen some strength return when I started doing physical therapy last year (therapy I had started due to neck pain...not muscular dystrophy!). I am happily married and have a beautiful 3 year old daughter. My faith in God and my family have definitely helped me through the tough times. Keep up the great work, John!

Hey John...Im 27 and was recently rediagnosed with LGMD 2A...I have beeen using a power chair for about 5yrs now and over those yrs have ignored my exercises and stretching and have become very tight...do u think I can (thru stretching and exercising) get back to a more limber, stronger body? If so what do u think would some good exercises to do?...Also how has MD affect ur working and dating life?...I have gone thru tons of issues with both....Im sorry if im asking too many questions I just dont run into people with LGMD 2A that often.

Hi! Thanks for answering to my comment on a video. I actually pressed "delete" instead of "reply"... things that I got used to! I find these muscular problems (from muscular dystrophy to polio) very interesting. Sorry if I made any mistakes.
Best of luck!
Lenni

Excellent exercises, thank you for taking the time to do these videos. I have limb girdle and it makes a lot of things very difficult. I'm hoping to recondition myself to do some of the things I can't do anymore, at least to some degree. Again, thank you for these videos.

Hello, my name is John too.

I have Miyoshi Myopathy it is an LGMD. I'm 24 and finding that my arms and legs are getting much weaker every year. I'm glad you put these videos up, they really help. have you tried toe up braces? They help me quite a bit when it comes to walking. There is a support group in yahoo that I visit. Someone posted your videos there.

But in my building theres lik 80 stairs and much bigger then these :(

Hmm your age 30, I have BMD i think and im 21 thats very bad for me cause I already walk almoust like you, sit down on a chair just like you but i can barelly get up, i cant climb the stairs anymore but i live in 3th floor building no elevator or lift and when im getting up my arms get too curved in elbow although my legs are alot stronger but im afraid my arms will brake if i push so much weight on them.