INDIVIDUAL WITH LGMD: Robert

12/4/2015:

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

LAND: Kanada

LGMD Unter-Typ: Unknown

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

I was diagnosed when I was 42 yrs. old.

Was waren Ihre ersten Symptome?:

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.

Haben Sie andere Familienmitglieder, die LGMD haben?:  

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

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

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

Was ist Ihre größte Errungenschaft?:

My greatest accomplishment is  the friendships I have developed.  

Wie hat LGMD dich zu der Person gemacht, die du heute bist?

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

Was möchten Sie der Welt über LGMD mitteilen?

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.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

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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