NAME:  Robert   Age: 71 yrs. oldUnknown -Robert P


LGMD Sub-Type: Unknown


At what age were you diagnosed:

I was diagnosed when I was 42 yrs. old.

What were your first symptoms:

I did not walk until I was 24 months old.  As a child I could not run like others but it was believed at the time to be caused by asthma.  I have never been physically strong.

Do you have other family members who have LGMD:  

Thankfully, no.  I am the only person in my family diagnosed with LGMD.

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

One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.

What is your greatest accomplishment:

My greatest accomplishment is  the friendships I have developed.  

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

I believe living with LGMD has taught me patience, organization, empathy for others, and humor.

What do you want the world to know about LGMD

As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.   Not everyone is as fortunate as I to work a full career and be able to plan for retirement.  Please help to find a treatment or cure.

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

I want to go for a walk along the roads and in the fields and forest around my home community.    I have not done that in over 50 years ….. and I miss it.  Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.

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