Thread: Mobility issue
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Old 26-03-18, 03:58 PM   #2
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Join Date: May 2010
Location: England
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Default Re: Mobility issue

Originally Posted by CAT View Post

I am a 60+ male with Huntingtons disease.

I have not lost any mobility over the last 5 years.

I put this down to not sitting down too much for 4/5 years - as to maintain balance in old age.

Does anyone know whether my situation falls within the natural variability for
this disease ?

Is there anyone else who has maintained their mobility and what did they do?

Welcome to Messy Board

I can't really give you an answer I'm afraid. It was my hubby who had HD and he went from fully mobile; to having a gait and then balance issues; and then to a wheelchair within the space of about 8 years. However, where each patient is different it's difficult to say if your being mobile at 60 + is down to the presentation in your case; the core strength etc you must be maintaining by not sitting; or a mixture of both?

Hubs was 49 when he passed so it could be that you have inherited what they call late onset. I think, as with Juvenile HD where the symptoms are different, late onset also present differently. Your neurologist and Occu Therapist (if you are seeing them) would be interested in your theory of delaying mobility issues I dare say.

I have always thought it is a pity people with the positive gene diagnosed are not offered OT and holistic therapy such as Alexander's Technique or yoga to help with balance way before mobility might be compromised.
I tried.
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