Let's talk wheelchairs and mobility scooters

Nice thing about it is that it is actually possible to self propel. I wouldn't have the energy for on grass, but might a bit on tarmac. Or in an art gallery or museum assuming we can ever get back into them.

 

Lots of models have the option of adding a tilt-in-space module. I decided to go for one when I bought my latest; I don't use it as often as the lift function now I'm no longer working, but when I do need to lie back, it's a brilliant thing to have. This is a similar model to my chair (mine has a full height back and a headrest, though).

 

@Kitty thanks.
Do you know how heavy this would make the chair? I have an electric wheelchair already with tilt in space & recline. I used to use electric more but since being more ill I find it difficult to control my wheelchair. So a manual chair (With a comfortable backrest, headrest that covers the full head and back, that can recline), with the recline and tilt function would be great so that I can possibly go out more, with carers pushing me. Also if it’s foldable it’s even more helpful too, for emergency dr visits etc.

My manual chair atm which is used in the house for pushing me to toilet, doesn’t have a proper backrest or headrest, and doesn’t have soft or cushioned seats so I can’t sit on it for more than a few mins, so not too sure how I could turn that into a chair as above? My electric chair actually has a control for operators to use at the back of the chair but both my partner and my mum don’t seem able to use it, as it’s very hard to control!!

 

I'm not sure, but I think 'monstrous' would probably cover it. It's designed to tackle all kinds of terrain, hence the low-pressure lawnmower tyres and the fat front castors (I enjoy birdwatching, so I wanted something that would go through mud and ruts as well as pavements).

I find it very responsive, but I'm clearly not as unwell as you, so I wouldn't want to make any predictions. I realised early on that being able to get around in a powerchair meant that I needed a vehicle with a ramp, so I worked towards getting a secondhand Motability van; it means the weight and size don't really matter, as I just drive it into the back.

I haven't really used manual chairs, as I live alone and can't self-propel. But I think it would need to be designed for tilt-in-space from the outset rather than a conversion. I always recommend looking around for secondhand options as well as new, as they can be half the price or less. You never know whether something's going to suit you until you've spent quite a lot of time in it, so it's easy to make expensive mistakes.

I really sympathise! I've been using powerchairs daily since 2001, but I still can't steer the wretched things unless I'm actually sitting in them. The fella who used to maintain mine, whose young daughter had cerebral palsy, said it takes a lot of practice with an empty chair.

 

Yes.. I’ve been looking around on eBay.. are there any other sites? The issue I’m seeing so far is that even though they say tilt and recline for some of the chairs, the pictures only show a partial tilt and recline, whereas I would need it to go completely flat.

So I’m trying to figure out which models of wheelchair actually do this. The one @obeat posted above seems good.. but I can’t see what the seats are like, there also isn’t any place for the neck to go.. my neck is very weak and I will need full support. My current electric wheelchair was also “custom made” to My measurements, because I’m quite small, they had to take quite a few inches off the normal adult backrest, so that my head rested on the headrest itself & not down the backrest, lol! I wish they made wheelchairs in a few different sizes ready made (not just the seat width).

That’s why I was interested in the Japanese chairs too, because I sometimes have bought clothes from Japanese brands & they tend to fit my height well, I think the average height is smaller there.. so I thought it might fit me well too as a wheelchair It’s stressful looking for wheelchairs when you have so many “requirements”!

 

My approach has been to find the best models by trying them out in the Disabled Living Centre (these tend to have a variety of names depending whereabouts in the country you live), and then looking for that specific chair secondhand. I've never been too unwell to visit a centre, though, and I don't know whether they can bring test equipment to your home. It'd be worth asking, once things get a bit more back to normal.

I only know one person who has a fully reclining self-propel, which is the Ugo Esteem. She likes it, but she has MS rather than ME, so the physical issues are a bit different.

Oh, I know that one – I'm 5' 9" and have very long thighs, and it seems to me that ALL wheelchairs (as well as all clothes) are made for tiny people! I still haven't found one where the footplate doesn't get grounded going up a steep slope, because it has to be pushed down so low when you're tall. Lord only knows how 6' 4" guys manage.

The unfairness of it is that if you just had a different disabling condition, the NHS would part fund a custom-built chair for you. My friend with MS has three chairs, all suited for different situations, and all funded. She decided to accept a wheelchair voucher so she could choose her own outdoor chair, but the others were provided by Wheelchair Services. I suspect you're at least as physically limited as she is.

I do have an NHS-supplied indoor powerchair, but I was probably only prescribed it because it was important at the time in helping me stay in work (outdoor ones sit too high to fit under desks).

 

@lunarainbows
I spent 90 minutes in Karma VIP2 at hospital for tests. Extremely comfortable. I'm 157cm so my head reaches headrest ok, legs and arms are adjustable. My sister found it easy to dismantle to put in car and easy to push. Cost me £1295 but I just couldn't manage outside trips in normal wheelchair. I can use it in the garden as a deckchair!!

 

Oh wonderful! What about your neck? there doesn’t seem to be an area to put your neck.. or was it not like that when you sat on it? Like did you push the headrest right up against the backrest, and was there cushioning for the neck?

And how were the seats - were they very soft against your lumbar region / tailbone and back and legs? With my current tilting wheelchair, it has a memory foam cushion and extra inflatable lumbar/thoracic cushions all along it basically because of my pain I can’t be against any hard surfaces, like sitting on a normal chair or one without memory foam/ pillow top type surface causes pain, so was wondering if this one has anything like that?

No rush to reply btw
I’m so happy for you - that you’ll be able to go out now

 

I was able to position the headrest directly onto the backrest. Everything is padded but you might still need additional padding. I felt no pressure anywhere probably because it tilts and reclines and these are adjustable.

 

I’m right at the high end of moderate at the moment and feeling the moment approaching when a mobility scooter might be necessary. I can’t walk more than 50 to a hundred yards without needing to rest. Putting to one side the problem of living in a first floor flat, I’m terrified by the idea. Would love to hear from others who’ve crossed the boundary and understand the massive emotional resistance I’m feeling towards it.

 

I got a scooter about 8 years ago, and it was a great relief. I love it and have fun with it too. But I now need a power wheelchair for in the house, and I just can't get myself to commit to it. They seem so big and ugly, and I can't face the fact that this is where I am in my life. My doctor has ordered it, and the evaluating PT is very supportive, and I just can't pull the trigger. It's very hard, @TheBassist, so I know where you're coming from.

 

Moved post

In England at least, wheelchair services tend to be hospital departments. GPs are usually reluctant to refer, and even if you are lucky, the basic self propel wheelchairs provided in the first instance are frankly easier to get from a car boot sale, often for under £30.

The conditions for the prescription of powered wheelchairs are a complete mess, and the service is massively underfunded. One of the rules is that you need to have used an indoor powered wheelie for X number of years before you can go on the waiting list for an outdoor one, which is precisely the opposite of what most part-time wheelchair users need.

People without severe fixed impairments or progressive conditions usually fund their own powerchairs, either by using their mobility allowance and/or with help from a charity. Motability will provide chairs to people who agree to hand over part of their mobility allowance, but unless your needs are very complex, it's an expensive ripoff (much like the car scheme).

It's far cheaper in the long run to buy your own, either secondhand or new. Good, solid powerchairs last for years, especially as ME patients tend not to hammer them all day every day; apart from the batteries, which need ongoing care and regular replacement, there's not much to go wrong with them.

 

This week (Thursday) I tried out a hire scooter on a local walking trail, along a former railway line (the Tissington Trail).

I coped with the physical and cognitive demands much better than I expected. Without intending to be out so long we went some four miles and were out for a whole hour. It was quite cold, though I did not feel particularly cold.

It was good to be outside and to actually get further from the car than I have in some eight years.

Surprisingly on dismount my arms were OK and my core muscles were less tired from sitting upright than I expected, however what did surprise me was my legs were unsteady and aching. The following day (Friday) my legs continued to be stiff and unsteady, and I experienced some PEM, though not as bad as I anticipated.

My arms are aching today (Saturday), as well as my legs continuing to be stiff and unsteady, and more PEM symptoms are appearing, but this is complicated by my having had my seasonal flue jab this morning.

(Unfortunately the scooter trial and the injection happened close together because they needed to be fitted in before my carer went on a two week holiday.)

 

Did you borrow a Tramper? They used to let them out at two or three of the Peak District cycle hire places; I last took one all the way around Ladybower before I got my own wheelie. They're hard work compared to a wheelchair, but it is so wonderful to get out.

Hopefully you won't feel battered for too long, and there'll be no reaction to the 'flu jab.


ETA: I'm not sure whereabouts you're located, but other places with decent paths and scooter hire facilities are RSPB Sherwood Forest, Rutland Water Nature Reserve, Rufford Abbey, Clumber Park, and Whisby Nature Park (might be too far away for you, but they sometimes get nesting nightingales in May and the song's such a joy).

 

Yes it was a Tramper.

Thank you for the mention of the other hire places. The Peak District hire places are handy for me and I go to a couple anyway, but the others you mentioned in Nottinghamshire, etc are a bit far at present.

The intention is over time to try out different options to see what works best for me.

There is no rush, as my house needs renovation work before I can store anything at home and get it easily in or out.

Partly I posted my experience because instead of having problems from holding out my arms and the limited back support, unexpectedly it was problems with my legs that I experienced with the Tramper.

 

It sounds as though you don’t experience a similar problem with your legs in response to other activity/or with PEM?
Could you have been tensing your legs without realising it, perhaps because it was an unfamiliar thing to be doing, or because you weren’t as comfortable as you could be?

I don’t know what you might be looking for in a scooter, Peter, but if you want one that will take you about in the Peak District you might want to look into the one I have. I have had the Supascoota Sport XL * for about 3-4 years https://www.supascoota.co.uk/

It’s good for slightly rougher ground such as paths across grass and uneven surfaces like farm tracks. Rougher surfaces use more battery power, obviously. I couldn’t tell you the steepness of hills I’ve used it on in degrees but it’s more than the blurb says lol. I might have used it on hills you know?

It’s certainly good for the old railway track trails. It manages firm sand, and a short stretch of shallow loose gravel or sand, and shortish grass. I’ve taken it along riverside paths eg the Lathkill and Bradford at Youlegreave.

It’s also useful in that my husband has taken it through kissing gates, over gates and stiles and up short flights of steps where I have got off and walked. As that uses up more energy than just sitting on it I take advantage of his being there. It takes apart and reassembles and it’s compact enough for places like shopping, hospitals etc. It fits in the car boot. It’s a ‘compromise’ scooter that works for me, but some people might need a more supportive seat. You might want something more substantial if you like the Tramper.

I’ve ridden it into bird hides too @Kitty, with the handles down it fits in a wheel chair spot

I think of it as a ‘compromise’ scooter as I can only afford one. Really I would like one that would get me up mountains and another that packs down like an umbrella. Or antigravity trousers.

Eta * I notice that the new model of mine is a little different.
Edit to cut a bit of personal info. On reflection I didn’t think I wanted it on here for ever.

 

This is the main challenge with scooters. You not only need to tense your legs to keep your balance, you have to hold them in position too. Relaxed, they tend to flop outwards at the knee, which would mean tensing your core to hold you upright instead.

It's the reason I went for a wheelchair, as you're held in place around the sides of your chest, there are knee guides that hold your legs in position, and the ride is less bouncy. It still needs some effort, but much less than scooters.

To be honest they're all compromises! My wheelie is comfortable, supports my body, has a tilt and rise function, and the wide lawnmower tyres will tackle all sorts – but it eats up batteries in no time. I'm waiting for the chap who built it to make me up a lithium pack at the moment, which will give me a better range.

Nearly all of them will do far more than the book says. I've taken those little boot scooters through inches of mud, across tussocky hillsides with steep adverse cambers, over beaches, and along deeply rutted tracks. If you can get out and stand, even briefly, it hugely increases where you can go. There are some really dodgy spots, such as small streams, steep slopes, or ground that's been dug out by rabbits, that the scooter or wheelie will cross perfectly safely as long as you're not actually sitting in it.

If you don't have a wheelchair-accessible vehicle and need a portable solution, boot scooters are far superior to folding powered wheelchairs (horrible steering and no torque).

 

Thank you @Skycloud and @Kitty for your useful comments.

 

Talking about powered wheelchairs, has anyone ever tried one of those power packs you can attach to manual wheelchairs?