Re: Anyone with confirmed lgmd?
Hi Russ, I have LGMD, and my beginnings were similar to yours. I remember not being able to climb the stairs to my grandmother's apartment when I was 4, and by that time, every time I tried to run I fell. I didn't get diagnosed until I was 19 or 20, but the neurologist just told me I had MD and wouldn't live more than 5 more years. (He was wrong, I'm 54 now).
I was always trying to be active, so I ended up on crutches by the time I was 17. To further complicate things, I had a spinal cord injury at 24 (C5/6) and lost most of the use of my arms and hands. (I was an auto mechanic and had a bad fall - one of the first women in my area and the first we knew about who also used crutches). After 8 months of rehab, I started getting involved in wheelchair sports and was able to build up some of my other muscles.
LGMD has many types, according to my doctor. He told me that some people lose muscles quickly (I'm one of them) and others much more slowly, even to the point of not realizing they have it. If you have an injury to a muscle, it doesn't always heal.
The best thing for me was to find a local clinic that knows about MD. I met other people at mine who have different types of MD and some of us became really good friends who support each other when needed. A few of us here have service dogs - mine can just about turn me over in bed (we're still working out the kinks). The doctors at these special clinics are very knowledgeable (at least the ones near me) and they're so helpful! They helped me get my first service dog. They also helped pay for my leg braces and wheelchairs a few times. (You may not need them)
It is life changing, but you can learn how to pace yourself (something I often forget to do). There are a lot of options out there - sports, where other people with disabilities teach you how to use the good parts of your body; vocational educational services that help train you for a new job (I went from mechanic to lawyer); and so many items to help with everyday living, like thick handled utensils, service dogs, reachers for dropped items. Good luck!
Last edited by McGrewsmom; 06-20-2013 at 06:25 PM.