LGMD Spotlight interview:
Country: United States
LGMD Sub-Type : LGMD (sub-type unknown)
At what age were you diagnosed:
I was diagnosed at the age of 43.
What were your first symptoms:
Vague symptoms have been present since birth. I had a waddling gait, could not climb, had difficulty with stairs but the doctors could not diagnose the cause. My mother always knew something was wrong….but what? I was finally diagnosed with LGMD when heart problems began at the age of 43.
Do you have other family members who have LGMD:
Yes, most likely. A second cousin (female) and my Grandpa Stone possibly had a form of MD because he was crippled from youth but back then they called it “rheumatism”. I also had another second cousin (male) who was totally helpless and died young.
What do you find to be the greatest challenges in living with LGMD:
The greatest challenge are falls! I was in Boy Scouts since the age of 11 and had difficulty keeping up with other boys in activities. I have experienced numerous falls. I require the rescue squad and neighbors to help me up as my wife is usually at work when I fall.
What is your greatest accomplishment:
My greatest accomplishments include fathering 4 children – 3 of which are still living. I was able to hold a job for 25 years and volunteered with the local rescue squad for 38 years; beginning at the age of 16. I continue to volunteer with the rescue squad but only answer the phone.
I served as a Boy Scout Leader (assistant scout Master for 25 years.) Currently, I am now an organizational representative. I was an Eagle Scout in 1978. For my Eagle project, I did a church cassette tape ministry. I continue to serve as the sound man at church today,
How has LGMD influenced you into becoming the person you are today:
All of my life – everything that I do is a challenge! But with work and determination, I have ‘Kept on Keeping on.’ I am determined to stay as active as I can be despite my LGMD.
What do you want the world to know about LGMD:
LGMD makes every accomplishment a real challenge. But work and the desire to succeed can make many things possible. My whole life has been hard but it could be worse….especially if I had a different type of muscular dystrophy or I had a more severe form of LGMD.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
If my LGMD could be cured tomorrow, I would want to be recertified as an EMT and then volunteer on active duty with the rescue squad.
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