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CAT 23-03-18 12:17 PM

Mobility issue
 
Hi,

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?

Trish 26-03-18 03:58 PM

Re: Mobility issue
 
[QUOTE=CAT;66000]Hi,

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?[/QUOTE]

Hi CAT,

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.

CAT 30-03-18 10:16 AM

Re: Mobility issue
 
Thank you for the information
[QUOTE=Trish;66002]Hi CAT,

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.[/QUOTE]

CAT 30-03-18 07:17 PM

Re: Mobility issue
 
Really sorry you have had such a tough time and I appreciate you are still trying to help others[QUOTE=Trish;66002]Hi CAT,

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.[/QUOTE]

banda 03-04-18 02:12 PM

Re: Mobility issue
 
Hi...my hubby was diagnosed in 2014 and was already symptomatic. He is 67 now and mobility is still quite good...he can walk our dogs twice a day and only uses a thumbstick. It is only the fatigue that holds him up. He has walked extensively all of his life so whether that helps I don't know.

Cupcake 03-04-18 05:59 PM

Re: Mobility issue
 
Hi Cat

Welcome to the board and sorry you are diagnosed HD positive.

My hubby had HD, and also kept mobility and had a slight gait, but was affected more with cognitive and mental issues, before sadly getting a form of cancer as well. I think everyone seems to have slightly different symptoms and issues there seems to be no rule of thumb:

I am pretty sure keeping yourself active and stimulating your brain has to be good for you, you are still relatively young, keep fighting against HD and long may your mobility and ability to do things last.

shiraz 04-04-18 10:58 AM

Re: Mobility issue
 
Hi CAT. My husband is now 74. We used to walk and cycle alot too. He was able to do this up until about 64 when he gradually got worse and started to struggle gait wise and stumble alot and just got incredibly tired with any exertion. It knocked his confidence. This past couple of years he's taken a real dip and his decline has been quite speedy - now he only goes very short distances (10/20 paces) with a stroller or he is in a wheelchair. He basically sits all day and either reads a paper or watches tv. But keeping fit and eating healthy surely must be a good way to go - long may it continue for you.

CAT 29-04-18 10:53 AM

Re: Mobility issue
 
Thank you very much for your feedback.
My consultant says my balance is still good as I rarely sit so this is a simple thing to try and it has benefitted my mobility alot. Just make sure you approach not sitting gradually. It took me 6 months before I could comfortably stand all day.

Regards CAT


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