Looking for people to talk to about LGMD

[Kmasta85]

Hello, I'm new to this whole healthboards.com experience. I was just looking to see If there was anyone else w/ Limb Girdle Muscular Dystrophy. I'm 19 and in college and always wanted to find someone that could relate to my problem. Let me know! ~Krista~

[KarriLewis]

How did you find out you had MD. My mom has it and I also show some symptoms but I am scared of finding out.

[Delightful]

Krista posted in feb, Ryan posted in june now I am posting in dec.... i dont know if any of you will ever see this, but i just found this site and i wanted to add my name to the list of ppl with LGMD.

Jenna aka Delightful

[michigani]

Hello everyone.
I actually posted a reply to Ryan last week but unfortunately the entire thread disappeared. I found out I had LGMD almost three years ago. Right now I'm going through that transition of appearing "normal" but not being able to do simple little things. It's frustrating and scary. Like, I'll go to someone's house to pick up my teenage duaghter, but I can't get up their railingless steps. What do I do ? Ring the doorbell with a long stick? Or some coach at my kid's practice will say" hey dad, grab a mit and play shortstop". I can't. I would certainly fall down. Anyone else in this phase? No one "healthy" can relate, although they try. Other than that I'm very happy and very blessed. I have a beautiful wife and 2 healthy daughters.
Mark

[DavidR81]

Mark,

I know exactly how you feel, I'm going through the same thing right now. It's nice to finally be able to talk to someone who I can relate to. I was diagnosed about a year ago, and still appear 'normal'. I havn't told most of my friends about it, and nobody even notices anything is wrong.

However, like you said even some of the simplest things become difficult, or impossible. Ice and snow are a big problem for me now. I can barely walk on it at all, and where I live we've got snow about 4-5 months of the year.

One of the first things I noticed and continues to be a problem is bending at the waist to do things like washing my hands at a low sink. Has anyone else had a similar problem? I feel like I'm going to fall forward, and usually need to hold myself with one arm and wash one hand at a time. I've noticed this years before I had any other noticable problems.

I sometimes wonder if it would be easier if most of the people around me knew the limitations I had, but its not an easy topic to bring up with friends. But aside from all that, I'm also quite happy and try not to let the limitations get in the way.

David