Announcement

Collapse
No announcement yet.

Not able to have powered wheelchair?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Vicky86
    replied
    Wheelchair services can fit special buttons to the controls so the user can reach them and not need to use their hand and fingers as much for the controls - my dad had very little use of his arms, hands & fingers and they were able to help him

    I would call wheelchair services and your local technology team for assistance

    Good luck 🤗

    Leave a comment:


  • Ellie
    replied
    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.

    Leave a comment:


  • Barbara236
    replied
    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!

    Leave a comment:


  • Ellie
    replied
    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.

    Leave a comment:


  • Barbara236
    replied
    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?

    Leave a comment:


  • Kayleigh
    replied
    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

    Leave a comment:


  • miranda
    replied
    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!

    Leave a comment:


  • Jude11
    replied
    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

    Leave a comment:


  • Lynne K
    replied
    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

    Leave a comment:


  • JAY TEE
    replied
    Christie, I have been lucky my MND down my left side and now cannot walk and talk. Luckily right side ok. I was given a Salsa M2 wheelchair by Local Council Dudley in the Black Country. I have had it for four years now and I sit in it all day. They upgraded the seat pad as well it very comfortable. You could try your local authority. Best wishes John

    Leave a comment:


  • Deb
    replied
    Hi Chrissie, This seems so unfair ! I'm not surprised you are upset and low.

    Your health needs, like Douglas's are so important and a manual wheelchair is really physically hard to push, especially uphill or over kerbs. It is also really uncomfortable as there is no suspension. My husband used to really struggle with his back pushing me and I am fairly slight and I wasnt mad keen on relying on his driving !

    I spend all day in my Salsa mini powerchair so it needs to be comfortable and supportive. As Ellie says it is not just to move around. Wheelchair services have been really patient with me as I had them to our home to change the backrest, head and foot support (and then back to the original one !!) They are now sorting a new air rotating cushion. I guess you dont know what suits until you try it although they have assured me they have had more demanding clientele !

    I can work the hand control Ok but it is very sensitive so it only needs the slightest movement. At clinic I have seen the same powerchair with eye, or attendant control .

    I was referred to wheelchair services when I was diagnosed by the MND nurse and in Leeds they have an MND wheelchair specialist. It wasn't an OT and it seems so unfair that this service is not available to everyone.

    Everything I can is crossed for you both,
    Love Debbie x

    Leave a comment:


  • Ellie
    replied
    Chrissie, you're right to say the special MNDA Neuro Spec powerchairs are best suited to Doug.

    For us, a wheelchair is NOT about getting from A to B, but needs to provide comfortable seating, back support, foot support, head support, tilt in space and recline function as our bodies wilt. That's why the MNDA collaborated with 3 wheelchair manufacturers...

    There are alternative drive methods such as head controls - I saw someone driving using switch controls at the knees - and attendant controls whereby a carer drives the powerchair (these may be hard to get but maybe something worth buying IF the OT cops on and provides a powerchair)

    My hands can only grip, so someone physically places my hand on the drive joystick, of which there are various shapes and sizes, and I use my shoulder strength to drive with very little effort.

    Hope the OT sees sense and, as Dina suggested, ring the Helpline if you're getting nowhere.

    Love Ellie.

    Leave a comment:


  • chrissie57
    replied
    Thank you, Ellie and Dina

    Ellie - I took her to mean that Douglas would not be able to operate the chair. He can still move his arms but has no real strength in them now and his hands are curled inwards so he finds it difficult to hold anything.
    If there is a chair with a battery pack to make pushing easier, I hope that could be a solution.

    Dina - I hope they can do something to make sure you can continue zipping around in your chair.

    To be fair I have only ever mentioned my health in passing - until today, it didn't seem to have a huge impact on Doug's situation; I guess I should have made myself clearer😕

    Leave a comment:


  • Sportingmac
    replied
    Seems that getting a truthful explanation for refusal from NHS services is a common compliant. The OT would have to apply to a 'nameless' NHS Panel that seems not to publish minutes of meetings - ask for a copy of the application and a copy of the minutes or decisions from that meeting.

    I have done so via my local CCG and my Rehab consultant - CCG says OT can supply the info - nothing yet - only been 8 weeks though.

    The OT should be looking at future needs and working to meet those on your behalf.

    I'll let you know how I get on. In the meantime ask the OT for decisions/minutes that offer an explanation - not from the OT but the NHS Panel.

    Best of luck

    Chas

    Leave a comment:


  • Gillette
    replied
    Originally posted by chrissie57 View Post
    Hi, Dina
    I did think about ringing the MNDA - especially when I found there is a version of the Salsa Mini which they helped design for sufferers of the disease.
    Is your chair powered? What will you do later if you are unable to 'drive' your own chair?
    We are just disappointed, really. If it is a matter of financing it we would probably be able to manage it so all not entirely lost, just wish we hadn't lost so much time

    Chrissie x
    Hi Chrissie

    Yes, mine is powered: it’s the Salsa Mini 2. I’m beginning to find it difficult to drive it so am going to ring the Posture and Mobility Service (the Wheelchair Team) who provided it, to see if something can be done to help.

    I understand completely about the time that’s been lost.

    Leave a comment:

Working...
X