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Old 11-10-16, 09:41 PM   #1
jaq
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Default Toppling to one side

M is toppling to one side doesn't seem to be able to keep sat up straight .

Wondering if any exercises that can be done to
Improve posture or if needs a different chair ?

We are going to see about wheel chairs thus week which is another step downwards .

My heart is breaking .
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Old 11-10-16, 10:12 PM   #2
Gabby
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Default Re: Toppling to one side

Quote:
Originally Posted by jaq View Post
M is toppling to one side doesn't seem to be able to keep sat up straight .

Wondering if any exercises that can be done to
Improve posture or if needs a different chair ?

We are going to see about wheel chairs thus week which is another step downwards .

My heart is breaking .
so sorry Jaq no suggestions but much love x

Gabby
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Old 12-10-16, 07:40 AM   #3
LECS
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Default Re: Toppling to one side

Quote:
Originally Posted by jaq View Post
M is toppling to one side doesn't seem to be able to keep sat up straight .

Wondering if any exercises that can be done to
Improve posture or if needs a different chair ?

We are going to see about wheel chairs thus week which is another step downwards .

My heart is breaking .
Hi Jaq. If unsupported I lean to the left, same side as my poor mum and because I remember how difficult it became to move her because her lean was so pronounced so none of the specialised chairs worked in putting her up straight I try and sit in something that keeps me up straighter like the arm of the chair. My mums lean meant she came forward because the arm wasn't enough then so she had a chair specially made for her but she always complained about sitting in it, I think it may have been because in trying to correct her posture after it was used to being where it wanted to be, gave her discomfort and pain. I do exercise but I think the thing I find that works best for me is not to sit in the same position for too long, keep changing positions. I do get very uncomfortable very easily. So sorry you are having to consider wheelchairs, my mum always refused to use one complaining it was too uncomfortable for her. I get very tired and often think if I didn't have to think about my walking and keeping upright by being in a chair it might be more pleasurable but I'm too scared to stop trying to walk well in case I'm never able to do it again. Gary uses a mobility scooter but I find if I use it I am not the best judge of how close I am to the kerb and avoiding people etc but he gets on well with it. Thinking of you. Lily.
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Old 12-10-16, 07:56 PM   #4
banda
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Default Re: Toppling to one side

You are not alone...B does the same and it worries me sick in the car...I took him to the local motoring assessment centre and they did advise a harness type thing and likewise he needs a special chair at home to sleep in too...but will he have any of it...NO! Hope you do better. Thinking of you, take care. xx
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Old 12-10-16, 08:26 PM   #5
jaq
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Default Re: Toppling to one side

Thanks everyone

Clearly it's common but difficult to deal th with but hey what's new !

It is clearly worse over the last few weeks .

I agree re wheel chairs I think he will try and walk for as long as possible and I agree it's just if there was a fall I don't want to be at the end of a queue but it's a difficult thing to face for both of us as I think with HD it's not an empowering step it's another loss ?

It's called a posture clinic so maybe they can help with the leaning .

Apparently there is also a falls department which no one has ever mentioned to us !

Lots of love to all xxx
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Old 13-10-16, 05:49 PM   #6
jaq
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Default Re: Toppling to one side

Well that was interesting

Really helpful health professionals

Leaning caused by obliquity ! Fur wheelchair special cushion needs to be fitted
They say m on an exams a leaning corrected .

Both said neuro Physio would help .

It's apparently a post code lottery and we lost so may persue privately .

Asked about chair at home he watches TVs in and yes specialist chair would be better but who funds these is this another post cost lottery ?

I feel like Oliver Twist asking for more and not sure what is or isn't provided .

Sorry a bit garbled but seems to have presented more questions any help appreciated X
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Old 27-10-16, 12:51 PM   #7
Allan
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Default Re: Toppling to one side

.
Hi everyone

The following OT document has a good section on Posture: Occupational Therapy for People with Huntingtonís Disease: Best Practice Guidelines
and the Specialised Wheelchair Seating National Clinical Guidelines has Checklists and Risk Assessment details throughout.

Postural Management

For occupational therapists aiming to promote improvements in posture and comfort in sitting for people with Huntingtonís disease it is recommended that:

An assessment of sitting ability and posture

Points to consider:
  • Assess the dimensions of a personís current chair/seat to ascertain whether it is the correct size and offering adequate support.

  • Assess whether the pelvis, trunk, neck, head and arms are adequately supported.

  • Ensure the personís feet are fully supported. Footwear that provides grip may assist.

  • Consider whether a cushion will provide additional postural support and whether pressure relief is required.

  • Where people are unable to sit comfortably or safely consider the need for specialist lounge and/or wheelchair seating.

  • Additional positioning devices may be considered to maintain position and/or safety. For example, head support, lateral trunk supports, positioning belts, a table or lap tray to provide upper body support.

  • Least restrictive positioning methods and adaptations should be trialled first before deciding upon using a harness as a positioning aid. Where seating adaptations restrict freedom of movement (e.g. tilt in space, positioning harness) legal aspects regarding restraint must be respected. Consent should ideally be obtained from the person. Where this is not possible, the therapist should assess a personís capacity and where this is lacking they may need to act in a personís best interest. All such decisions need justifying and documenting as to the reasons for them. Consider whether a contoured backrest may also provide additional trunk support.

  • Any seating system needs to be robust to withstand heavy transfers.

  • Requesting brakes on all 4 casters may make transfers safer.

  • Regular maintenance and checks of any seating/chair is necessary, as clips and screws can become loose.

  • A modular seating or wheelchair system that can be adapted to increase its longevity can be useful where the individualís condition is changing frequently.

  • Consider breathable materials to enhance comfort and wipe clean material due to continence and spillage issues.

  • It is essential that a personís positioning and comfort should be regularly reviewed over time, as presentation will change. These options should be assessed in situ over time to assess whether they enhance posture and function.

  • Training should be provided to either the person with Huntingtonísí disease and/or their carer on how to use any seating system/ adaptations, this should also be documented.
Also:

http://seatingmatters.com/posture

http://seatingmatters.com/posture-can-kill

http://seatingmatters.com/wp-content/uploads/2016/02/Poor_Seating.pdf

.
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