Losing the motorised wheelchair.

[Music man's wife]

Chris has had his Salsa mini 2 for 4 years now. He can't operate it himself anymore and its been getting increasingly uncomfortable for him.
He had a wheelchair assessment the other week and the OT was fairly insistent he should have a manual wheelchair as he can't operate it himself.
Has anyone been in this situation and have any advice?

[Ellie]

My thoughts: there are 2 issues, comfort and driving:

Comfort - do you know why Chris isn't comfortable?

• Can this be improved in his current powerchair with better cushions, supports, headrest, footrests?
• If he can't get comfortable in his Salsa, will a manual chair be any different?
• If he can't get comfortable in his Salsa, what about a different/bigger powerchair?

Driving

• Could he manage head conrols, on a different headrest, if necessary?
• There is an 'Attendant Control' which is mounted on the back of the chair and allows someone else to drive it.
• Ask assistive technology if they have an eye gaze drive app - there are several on the market but can be like hen's teeth to get.

Manual Chair

• If he were to go into a manual chair, would you and the carers have difficulty pushing it?
• It would have to be high spec: neurological, have tilt in space and be highly customisable.
• It would have to accommodate an mount for eye gaze tablet.

If it feels like they're taking the easy option by putting Chris into a manual chair, rather than doing what's best for the client, then don the boxing gloves... again. xx

[Music man's wife]

Thank you Ellie, you have raised some excellent points. When they came out I thought they'd be looking for a more comfortable cushion, so was a bit gobsmacked when they said they wanted to revert to a manual.
I agree I think they are trying to take the easier option, I'll get the MND physio who attends the neurologist appointments involved xxx

[MMG]

We have had attendant controls fitted to the powerchair. They have taken some getting used to as they are more sensitive than the chair controls. Probably need adjusting again.

The manual chair was not as comfortable or sturdy as the powerchair so it might be a step backwards.

[Music man's wife]

Thanks MMG, we have those attendant controls and I've never got away with them, far to jittery.
The MND physio from Newcastle is going to phone on Thursday, I know I'm going to make a pigs ear of the whole thing.

[Ellie]

The MND physio from Newcastle is going to phone on Thursday, I know I'm going to make a pigs ear of the whole thing.

It might help to write down the questions and what it is that Chris/you want to achieve - it sounds silly but if you have a clear idea of what your goal is, you can tailor the questions to fit the outcome.

In work, anytime I needed extra confidence on a phone call, I used to stand up and talk, rather than sit down 😁

[Tony]

Might also be worth speaking to the MNDA wheelchair specialist. She had an article in the magazine a couple of months ago. She’s very knowledgeable and very helpful. She can only advise but the more information you have the better.

[Music man's wife]

Might also be worth speaking to the MNDA wheelchair specialist. She had an article in the magazine a couple of months ago. She’s very knowledgeable and very helpful. She can only advise but the more information you have the better.

Thanks for that Tony I didn't know the MNDA had a specialist wheelchair advisor, I'll give them a call.

[Ellie]

Music man's wife I know I'm under a different health service, but this may be helpful for you to know in advance of your phone call re C's wheelchair, it might give you ideas and insights.

I had a wheelchair seating review today and, after much hands-on examination, this was the outcome:

• My headrest will be changed, one side will have added padding as my head leans to one side, and the mount, which is currently centred, will be moved to accommodate my asymmetrical trunk.
• The lateral support on one side will be further padded.
• The lateral support on the other side will be greatly enhanced, complete with bracket.

[Music man's wife]

Music man's wife I know I'm under a different health service, but this may be helpful for you to know in advance of your phone call re C's wheelchair, it might give you ideas and insights.

I had a wheelchair seating review today and, after much hands-on examination, this was the outcome:

• My headrest will be changed, one side will have added padding as my head leans to one side, and the mount, which is currently centred, will be moved to accommodate my asymmetrical trunk.
• The lateral support on one side will be further padded.
• The lateral support on the other side will be greatly enhanced, complete with bracket.

Thanks Ellie, there is no way they were looking at that level of assessment. Basically they googled the wheelchair they want Chris to try and showed us the picture! I asked about various cushions and was told you get what it comes with.
I will let you know how we get on, I don't think that poor OT knows what he's in for

[Music man's wife]

Sorry about that first smiley face, don't know where it came from! xxxx

[Music man's wife]

They delivered the very tatty and much used wheelchair they want Chris to try today. It's flipping massive. I could barely get it in the house without him in it.
We'll see what the OT says tomorrow.

[Ellie]

Sounds like a Frankenstein contraption, not something suitable for someone with complex needs 😬

[Music man's wife]

Never again will Chris say he is uncomfortable in his wheelchair. What a whole can of worms that opened.
The OT and the wheelchair technician struggled as I did to get the wheelchair in the house, far to big for narrow doorways.
So things are staying the same however if his motorised chair stops working they won't replace it.
Thanks for your help Ellie I have to admit to reading bits of it to the MND physio xxx