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Thread: Not able to have powered wheelchair?

  1. #11
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Chrissie, I'm flabergasted by the refusal to give your Doug a powered wheelchair. I got mine through the local wheelchair services after my OT referred me. She had told me how difficult it was to get a chair. They would not give them for just outside. People had to be unable to safely walk inside too. I only got mine because of the amount of falls that I'd had at home. My OTs reason for requesting a powered chair was to avoid falls.

    I wish Doug and yourself have luck on your side on overturning this seriously wrong decision. Having problems with his hands doesn't mean Doug can't make use of a powered wheelchair. As was said above other means of driving a wheelchair are available.

    A word of caution. You probably won't be allowed to add a power pack to the manual wheelchair Doug was given. I asked my wheelchair provider and they refused. I had searched online for how to change a manual chair to a powered one, and this can be done, but it'd have to be a chair that you bought. That would be only a temporary measure because manual chairs do not give upper body and neck support. Nor are they a comfortable ride because no suspension.

    I hope that you have good news soon. Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #12
    Forum Member
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    Jul 2019
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    Hi Christie
    I waited four months for my power chair but they can supply one with a easy to use ball control and also control on back that you can use when your husband is too tired. Keep nagging them and you must mention your own health problems.

    Good luck
    Judy x

  3. #13
    Forum Member
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    I would definitely contact MNDA to progress this for Doug (and you!). They used to have a specialist wheelchair person but I'm not sure if they still do. This is a totally unacceptable situation for you both. I know someone with "curled" fingers who can operate the joystick if someone places her hand on the control. Another person operates the control with a sponge ball under his chin!

  4. #14
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by miranda View Post
    I would definitely contact MNDA to progress this for Doug (and you!). They used to have a specialist wheelchair person but I'm not sure if they still do.
    Hi Chrissie and Miranda,

    The MNDA have a Wheelchair Support Service:-
    https://www.mndassociation.org/suppo...chair-service/

    Love
    Kayleigh x

  5. #15
    Can a person in a bad MND stage still use electric wheelchair? They able to move their hand properly?
    I'm asking as we need to buy one for my dad (he only received used, basic one, with no head support from our social services and it's been taken away after they gave my dad special bed - saying that since he needs the bed, they consider him to be a patient who doesn't move at all). Has anyone tips on some good manual wheelchairs suitable for MND?

  6. #16
    Forum Member Ellie's Avatar
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    Barbara, that's horrific treatment of your dad!

    There are various different drive control options on a powerchair and the MNDA have special wheelchair specs with 3 manufacturers, all giving head supports etc.

    Have a read of this: https://www.mndassociation.org/suppo...chair-service/

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Thank you so much Ellie! My dad doesn't live in the UK and, unfortunately, some countries prefer bureaucracy over patients... However, we will get him support he needs no matter what!

  8. #18
    Forum Member Ellie's Avatar
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    In that case Barbara, look for a manual wheelchair with a high back for upper body and neck/head support and, preferably, can recline. Footrests should be adjustable too.

    The cheaper 'transit' manual chairs are not suitable if a person with MND is spending more than a few mins in it - they don't offer enough support.

    Often you need to buy a good cushion, backrest and head support separately, if the chair only comes with basic ones - he may get away with the basic ones for a while but we really do need proper pressure relief.

    Some 'manual' chairs come with power assistance, which are more expensive of course!

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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