LGMD “Spotlight Interview”

Name:     Chuck                  Alter:  63 years old

Land:   Canada

LGMD Unter-Typ:   LGMD 2L/R12 Anoctamin5-related

In welchem Alter wurde bei Ihnen die Diagnose gestellt?? 

 I was diagnosed at the age of 50.

Was waren Ihre ersten SYMPTOME?  

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.

Haben Sie andere Familienmitglieder, die an LGMD leiden?  

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

Was sind für Sie die größten Herausforderungen im Leben mit LGMD? 

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

Was ist Ihr größter ERFOLG?  

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. 

Was möchten Sie der Welt über LGMD mitteilen??

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.