Hello all,We're in the market for a new wheelchair for my Mum (PSP diagnosed Aug 2022) as our old borrowed one is rapidly disintegrating.
There is a bewildering range and we've only got so far as to visit a few showrooms, speak to some not-very-useful sales agents and pick up a pile of brochures. I guess we need to factor in frequency of use and comfort for my Mum (little) as well as for me and my husband (tall) as attendants. Is there any benefit to self-propelled wheels? -- I can't see my Mum using these much and certainly not for long. I'd like chunkier tyres so we can walk on rough-ish terrain. Any tips on wheelchair buying?
My next query is how do you decide when to start using a wheelchair for everything, inside and outside the house? Mum still potters around with a 3-wheeled walker but has increasingly frequent falls and we're always primed for the next big crash and trips to A&E. It's utterly nerve-racking. I suppose answer is an OT should assess this need though their visits are infrequent. Any other ideas welcome.
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Bodhi17
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In the ever changing progression it’s so hard to know what to do at any given time. Insist on the OT coming out so you can discuss options and OT may provide one free of charge on a borrowed basis.
Please contact your OT who will refer you to the wheelchair service, which is part of the NHS if you are in the UK.
They will recommend what type of chair your Mum will need. These are often larger powered ones with additional features such as tilted seats and headrests. (As used by the late Rob Borrows - who had MND)
The Red Cross also have a wheelchair service who may be able to help.
Definitely approach your local NHS wheelchair services for advice. Mum was advised she needed a space and tilt wheelchair but the NhS didn’t provide that as she was in a nursing home but if she’d been at home they would have so we had to buy it privately and opted for a second hand one. She was unable to use a self propelled one due to lack of ability to drive it herself safely. Good luck.
hello, I am aware that what is available in each county varies but where we live, the Wheelchair service is separate from the OT service and our Neuro physio referred us to them. We have a manual chair (not self propelled) and a powered chair. The powered chair is loaned to the client as long as the user is able to operate it, ie it is for the client not the carer. (I could debate this for a long time but that is for another time!)
What we use in the house due the the ease of mobility is actually a commode shower chair. This was organised by the OT.
Please ask your community services, it is amazing how much equipment you need over time. We were supplied a hospital bed which has been brilliant and various aids to help my husband out of a chair and to help with transfers, these have been needed due to his weight and to save my back! Good luck
As others have mentioned, get a referral to 'wheelchair services'.
You should be able to get this from either your GP or the parkinsons nurse ( where we are the parkinson's nurse also handles the parkinson's plus diseases like PSP). We approched the OT, but they needed a referral from GP first. They will measure and weigh your Mun to ensure the correct size chair.
Consider if you want self-propelled (large rear wheels so the patient can propel themselves) or a transit one (smaller wheels, easier to put in car). To get a self-propelled one from NHS the patient will need to be assessed to ensure they are safe using it.
I echo what everyone else has said. NHS wheelchair service should prescribe what is most suitable as they have for my husband. He was unsuitable to have a powered or self propelled one. With the agreement of the wheelchair service, we have purchased a motor that fits his chair to make it much easier for me to manoeuvre. One other bonus is also that any repairs are done quickly under the NHS and at no cost to us - and over the 18 months he has had it we have had quite a few repairs needed
I had prepared a long reply then lost it! Trying to Summarise:
Red Cross will lend a wheelchair at short notice e.g for an injury - they charge a weekly fee, at least in our area.
Referral to wheelchair services - our nurse at the GP gave the referral (we were already using a self funded wheelchair to access to GP...) We were told to have low expectations - it took months, the assessment was via video call, we got what we needed i.e. a crash tested wheelchair - safe to ride in a WAV, but it was heavy and clunky so I've parked it in the garage.
Indoors: we've used self funded wheelchair - I-Go Airrex (self propelled) - choosing self propelled was a mistake as G can't control it but will try to 😅🧑🦽. It also didn't have a seatbelt and I was unable to fit one.
As this wheelchair has been worn out (heavy user + heavy use) I've replaced with a "Days" transit wheelchair which is relatively inexpensive (and claimed VAT back) and it's been great. Brakes on the handles i.e. where the attendant is in control and not the passenger - this has made a big difference to me. It also folds easily and takes little space in the car.
Outdoors: We found skinny wheels get stuck easily, so also bought a "MobiQuip All Terrain, Lightweight, Folding, Manual Self Propelled Aluminium Wheelchair, 24 Inch Mountain Bike Style Pneumatic Tyres". This has been versatile enough to take on flights and holidays as well as in gardens and parks and even on the beach (can pull it backwards on compacted sand). Anywhere except inside the house where the big wheels can get in the way (and there is always some sand left in the tyres). Get a good cushion and a rechargeable tyre inflator.
You ask how to decide when to start using the wheelchair for everything. That is a complex question.
We want to maintain G's ability to walk so will supervise and support his walking with a walking frame as often as possible.
We also want to maintain his "sit-to-stand" ability so still do transfers from wheelchair to car seat (pivot seat) and to riser recliner. The longest G sits in a wheel chair is a couple of hours when out and about.
If you are needing a wheelchair for use as their main seat i.e. whenever they are not in bed or in the bathroom, you definitely need a more detailed assessment from the wheelchair service and you also need them to swap the chair as needs change.
I wish you luck with these complex decisions. 🌻🧑🦽
we had bought one for our brother he has CBD. Physio said we would need one that could be adapted so referred to wheelchair services (WESTMARC) Scotland. My brother has now had two totally different wheelchairs. His latest is a tilt in space with head support, lateral supports and foot plates which elevate. Brakes on handles. Easy to move around in and has helped so much with us all going out. The OT at WESTMARC also adjust and maintain it. We do have a wait however.
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