My name is Linda and I am 58 years old. I was diagnosed in 1984 when I took my youngest brother to be tested. My parents never indicated or said I had MD but were afraid my brother might have it because our father had it. So when I took my brother to be tested I thought I might as well be tested just to make sure I didn't have it. Unfortunately when the doctor came in the room he said you both have it but Brian (my brother) has it worse than you. Needless to say I was in shock, but then thought, well I don't have any signs so I don't have to worry. I hadn't put together yet that I did have the facial signs, because I couldn't whistle or drink out of a straw like others could, but I thought that was nothing.

My father started having symptoms when he was around 19 years old, which was the age Brian starting to have problems lifting his arms. I was 32 at this time and did not have any symptoms except the facial. However, when I was around 43 I started to have trouble lifting my arms above my head. A year or two later I couldn't run anymore. I could walk but not run. Then the walking became a little more difficult, but until about three years ago I was still going up and down stairs. It was difficult, but I could still do it.

In 2006 I broke my right foot twice in the same year and was walking with a walker, and have been ever since. If I fall someone has to literally pick me up and stand me up. My right side is my weaker side and this July I fell and broke my left ankle in three places. I couldn't put any weight on it for 5 weeks and was in nursing home rehab for that whole time. I came home on Aug. 31 with the cast and could bear weight. I now have a cam cast which I hope to get off on Oct. 7th and then an air cast, or else I will have to keep the cam cast for a couple more weeks and then the air cast. I have a plate, screws, wire and hook in my ankle now. I am on the mend and will be walking with the walker for a while, but my goal is to be able to walk without the walker in time. I do daily exercises and take several vitamins.

My father passed away at the age of 72 and my brother Brian passed away at the age of 39. I feel, Brain just kind of gave up. He hadn't been out of his room for over a year, except for our mothers funeral. My oldest daughter, who is 37, has FSH and is starting to have difficulty lifting her arms above her head. Her daughter (my granddaughter), who is 16, also has it. She has the facial signs. I knew my daughter had FSH when she was around 11 because I had seen the facial signs; before that I didn't see any signs on her. I also had seen them on my granddaughter around the same age. My granddaughter and I have had the genetic testing, which was positive for FSH. I actually went to the Mayo Clinic and saw Eric Sorensen the Neurologist there, and told him I thought we had FSH, not Limb Girdle like they told my dad he had and he agreed.

I pray for a cure soon, and for now I just do the best I can with this disease.