LGMD “Spotlight Interview”

Name:     Chuck                  Age:  63 years old

Country:   Canada

LGMD Sub-Type:   LGMD 2L/R12 Anoctamin5-related

At what age were you diagnosed? 

 I was diagnosed at the age of 50.

What were your first SYMPTOMS?  

When I went into the hospital due to a stroke the Doctors noticed that all the muscles were gone from my back and bones were protruding.

Do you have other family members who have LGMD?  

No, I am the only one with LGMD in my family.

What do you find to be the greatest challenges in living with LGMD? 

The greatest challenge is seeing myself weaken and having to do less activities.

What is your greatest ACCOMPLISHMENT?  

Besides my grandkids, I was a siding expert and designed a measuring guide for D.Y.I. installation that is now the standard for North America.   Also, a siding & shingle display that I designed and built was installed in every Home Depot in North America. 

I raise money and awareness of MD with my table set ups.  Each year I usually raise about $12,000.00

I was also the president of the London, Ontario chapter of Muscular Dystrophy for 4 years.

How has LGMD influenced you into becoming the person you are today?  

Being unable to participate in things I used to be able to do I had to reinvent myself.  I saw a use for my design and marketing skills and now raise $12,000 every year for MDC   I enjoy being able to make a difference and raise awareness of MD and find this very rewarding. 

What do you want the world to know about LGMD?

That it attacks your leg muscles 1^st.  That it is a hereditary muscle disease.

That I have found out how inaccessible many places are for me because they have steps.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do?

If I was cured tomorrow, I would book a scuba diving trip to Australia.