Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > New Members

New Members Introduce yourself, and get to know how the HDA Message Board works

Reply
 
Thread Tools Display Modes
Old 23-03-18, 12:17 PM   #1
CAT
Approved Member
 
Join Date: Mar 2018
Posts: 4
Default 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?
CAT is offline   Reply With Quote
Old 26-03-18, 03:58 PM   #2
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,387
Default Re: Mobility issue

Quote:
Originally Posted by CAT View Post
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?
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.
__________________
I tried.
Trish is offline   Reply With Quote
Old 30-03-18, 10:16 AM   #3
CAT
Approved Member
 
Join Date: Mar 2018
Posts: 4
Default Re: Mobility issue

Thank you for the information
Quote:
Originally Posted by Trish View Post
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 is offline   Reply With Quote
Old 30-03-18, 07:17 PM   #4
CAT
Approved Member
 
Join Date: Mar 2018
Posts: 4
Default Re: Mobility issue

Really sorry you have had such a tough time and I appreciate you are still trying to help others
Quote:
Originally Posted by Trish View Post
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 is offline   Reply With Quote
Old 03-04-18, 02:12 PM   #5
banda
Approved Member
 
Join Date: Apr 2014
Location: Consett, County Durham
Posts: 477
Default 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.
banda is offline   Reply With Quote
Old 03-04-18, 05:59 PM   #6
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default 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.
Cupcake is offline   Reply With Quote
Old 04-04-18, 10:58 AM   #7
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 885
Default 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.
shiraz is offline   Reply With Quote
Old 29-04-18, 10:53 AM   #8
CAT
Approved Member
 
Join Date: Mar 2018
Posts: 4
Default 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
CAT is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 10:40 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA