INDIVIDUAL WITH LGMD: Robert

12/4/2015:

NOM :  Robert   L'âge: 71 yrs. oldUnknown -Robert P

PAYS: Canada

LGMD Sous-type: Unknown

 

À quel âge avez-vous été diagnostiqué ?:

I was diagnosed when I was 42 yrs. old.

Quels ont été vos premiers symptômes ?:

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.

Avez-vous d'autres membres de votre famille atteints de LGMD ?:  

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

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le LGMD ?:

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

Quelle est votre plus grande réussite ?:

My greatest accomplishment is  the friendships I have developed.  

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?: 

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

Que voulez-vous que le monde sache sur le 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.

Si votre LGMD pouvait être "guérie" demain, quelle serait la première chose que vous souhaiteriez faire ?:

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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