Powered wheelchair that tilts for indoors and garden path UK

[Kitty]

I did a lot of playing around with the position of the armrests and the angle of the joystick bit before, but there may have been too much wrong to get very far

Yeah, I really feel for you—it is hard. The "right" thing might be a four millimetre adjustment, in combination with a 12 millimetre adjustment in something apparently unrelated. It's so much easier if you can sort all that out while you're still fairly mildly affected. Back then, as long as I had seats at a couple of different levels I could strip my chair down to the frame.

It's worth seeing if weight shifts make a difference when you're able, either by tilting the seat or being on a slope. if it does, that will give really useful information to the people doing the adjustments. They may not even have thought of gravity as a factor in that aspect of chair setup.

 

[Evergreen]

I have a question for @Kitty, @Binkie4 @Dolphin and any other wheeled-up people.

We're having work done so that I can access the garden. Basically there will be two patios joined by a path. The path is 160cm wide, plus 6-10cm edging stone on either side.

The surface of the patios and path will be the same grippy tile, but the gradient changes from one part of the garden to another. So the path will be about 15cm from ground level at one end, and about 30cm from ground level at the other end.

My question is: would you feel safe travelling along a nice wide path like that in your wheelchair even though it's not level with the surrounding ground? Or would you much prefer the edging stone on either side to be raised, so that it would hopefully bump an errant wheel back onto the path?

To me, having no raised kerb sounds a bit like having a ramp with no rail, and I would not do that. There'll be a good rail on the ramp in the front. Is it just my inexperience leading me to be overly cautious? Or should I definitely ask for a kerb/raised edges on the path?

 

[Binkie4]

@Evergreen. Sounds a great, carefully thought out project.
If it were me, I would prefer a kerb just so that I would know I was safe even if I lost concentration or something interesting caught my eye. Some days you may be tireder than others. Having kerbs makes it fail safe. I would relax more which saves energy knowing that I could not run off the path. I hope you gain a lot of pleasure from your spells in the garden.

 

[Evergreen]

@Evergreen. Sounds a great, carefully thought out project.
If it were me, I would prefer a kerb just so that I would know I was safe even if I lost concentration or something interesting caught my eye. Some days you may be tireder than others. Having kerbs makes it fail safe. I would relax more which saves energy knowing that I could not run off the path. I hope you gain a lot of pleasure from your spells in the garden.

Thank you for saying that @Binkie4!

Your reasons make sense to me. When more tired, I do things like walk into doorframes. So I will likely do the same in the chair. And you're so right - I will relax more if I know we're not just relying on my unreliable brain to get me to the other end safely.

It's been kind of hair-raising planning it. The official guidelines are really aimed at public buildings servicing people with all kinds of disabilities, so some of that we don't need. But figuring out what we do need is a bit tricky when you don't have experience being out and about in a chair. We've a really good company doing the job, but they don't have loads of experience with making things accessible. Here's what I've discovered: when something makes me think "That sounds dangerous", it's usually because it is!

 

[Kitty]

My question is: would you feel safe travelling along a nice wide path like that in your wheelchair even though it's not level with the surrounding ground?

Yes, I climb steep grassy hills with rabbit holes and adverse cambers, and roll on canal towpaths having near misses because I'm too busy looking for dragonflies.

I'll cheerfully tackle the steep path up to the clifftop at Abereiddy. But I do it because I'm used to it—what matters is whether you feel safe.

Or would you much prefer the edging stone on either side to be raised

Personally I'm not keen on kerbs, you can get stuck against them if you're brain fogged, or keep catching the spinning castors. Worse still, they can mean that if you suddenly feel unwell—or just realise you've forgotten your KitKat—you can't easily turn on the spot and zoom back into the house. However, turning on the spot might not be a problem with a path as wide as that.

Can't you just go across the grass when you want to go out? It's a hell of a lot cheaper than laying hard standing. I use the wheelchair accessible paths thoughtfully provided by the council to keep my pot plants on, and drive over the lawn. It's not a problem even though it hasn't been mowed since the year before last.

 

[Evergreen]

Yes, I climb steep grassy hills with rabbit holes and adverse cambers, and roll on canal towpaths having near misses because I'm too busy looking for dragonflies.

Brilliant!

Personally I'm not keen on kerbs, you can get stuck against them if you're brain fogged, or keep catching the spinning castors. Worse still, they can mean that if you suddenly feel unwell—or just realise you've forgotten your KitKat—you can't easily turn on the spot and zoom back into the house. However, turning on the spot might not be a problem with a path as wide as that.

I see what you mean - good to hear the downsides too. Yeah, I should be able to turn because my chair turns on the spot and the path should be wide enough.

Can't you just go across the grass when you want to go out? It's a hell of a lot cheaper than laying hard standing. I use the wheelchair accessible paths thoughtfully provided by the council to keep my pot plants on, and drive over the lawn. It's not a problem even though it hasn't been mowed since the year before last.

Unfortunately not. There's no level or ramped access (until now, we're mid-job). I'd have to do a ski jump to reach grass, and it's very lumpy terrain. The house and garden are at different levels, with different parts of the house further from the ground, and then the garden also slopes uphill (hard to tell because you keep falling into holes!)

The only alternative would have been to do the lot in decking, but it needs maintenance and we had problems with rats under the decking that was here when we moved in. And woodlice because it was rotting. So that didn't appeal.

I know the last thing the world needs is more paving, but actually the only completely new bit is the path. The rest had concrete already from the previous owners, under the decking. We're planning on making up for it with more trees and plants in the next few years.

 

[Evergreen]

Kerb on the path was definitely the right choice! Had my first tour of the patio yesterday, just pushed in a transit wheelchair. It's all a good bit higher than the grass, 20-30cm higher. We got kerbs just on the path joining two areas of patio, and on the place where I will park the powerchair, when I can use it. I felt perfectly safe on those areas, but quite nervous when I was pushed close to the edge on the bits without kerb. If I went off the patio in a chair, I think I'd hurt an arm or head. Haven't got many spares of those.

Waiting on a guy to come adjust the powerchair. My good arm has become my bad arm, so we need to switch the joystick to the other side and try to get it in the best position possible.

So all I need now is a significant improvement in my ME/CFS, so that I can actually use the powerchair. I'm sure that's right around the corner.

 

[Binkie4]

Glad that you are content you made the right decision @Evergreen and hope that by the time winter ends, you have your chair adjusted to your capacities, but mostly that your ME is giving you a break so that you can enjoy outside. I love being outside even though excursions have been few and far between lately.

 

[Kitty]

Kerb on the path was definitely the right choice! Had my first tour of the patio yesterday, just pushed in a transit wheelchair.

Yay, fantastic!

I felt perfectly safe on those areas, but quite nervous when I was pushed close to the edge on the bits without kerb.

You'll get used to it. After all, it's a really weird experience being pushed in an oversized pram, or going about in a car-for-one that doesn't even keep the rain out. But it becomes normal, and if you're able to go out enough you'll stop even looking at the edge.

People learning to drive worry about clipping parked cars to begin with, yet before long they're driving along residential roads without really attending to it. Their back brains have learned how to do it safely without even bothering their thinking brains.

[Slight edit for clarity]

 

[Evergreen]

Glad that you are content you made the right decision @Evergreen and hope that by the time winter ends, you have your chair adjusted to your capacities, but mostly that your ME is giving you a break so that you can enjoy outside. I love being outside even though excursions have been few and far between lately.

Thank you @Binkie4!

You'll get used to it. After all, it's a really weird experience being pushed in an oversized pram, or going about in a car-for-one that doesn't even keep the rain out. But it becomes normal, and if you're able to go out enough you'll stop even looking at the edge.

It's being pushed close to the edge that I don't like. I think I'll be fine with driving close to the edge!

 

[Evergreen]

Just had the guy here doing adjustments. I kept saying "Kitty said it's best if..." So you're famous, @Kitty!

Had to stop when I hit a cognitive wall. Couldn't make decisions any more.

Fingers crossed the adjustments will help. Husband also now knows how to tweak the things I'm likely to need.

So am really hoping I'll get out to play on the patio over Christmas. Am still super wobbly when steering, because I've had no practice. Entirely possible I'll fly off the patio at some point.

 

[Kitty]

Had to stop when I hit a cognitive wall. Couldn't make decisions any more.

It is overwhelming! I seem to hit that wall after five minutes even though I'm not severely affected.

Also, it takes a while to work out whether one small adjustment makes things better or worse. It's like new shoes, you have to walk in them properly to know whether or not they're going to rub. You can't be sure in the shop.

You often end up getting one thing right, only to have it thrown out by an adjustment somewhere else. It's a pain in the neck, but it does help you learn what works for you and what doesn't. You get better at predicting whether tweaking something is likely to help.

So am really hoping I'll get out to play on the patio over Christmas.

Fingers crossed!

 

[Binkie4]

I hope you are soon able to use your energy to be outside in your wheelchair @Evergreen.

One thing I have noticed is that I need to have sufficient energy to concentrate fully when driving my wheelchair. I consider it very easy to drive and manoevre in all ways. It rotates on the spot and attracts attention at its ease of use. If however I don't give it my full attention which takes energy, it is very easy to clip a door frame which rather spoils the impression. I only noticed this when I had had it for a length of time, and had become less careful, often when I was tired. I now try to anticipate possible difficult angles when approaching a doorway so that I line it up appropriately and enter smoothly. I do need energy for that. I would need to concentrate when using the path you have described. My favourite uses are gardens like RHS Wisley or National Trust properties where there is plenty of space.

I am unable to use my wheelchair at home because we haven't organised ramps or paths and I can walk a certain number of steps in the house. I I enjoy our rear garden but could not enjoy it fully because my walking distance is so restricted and I couldn't reach the end of the garden. We solved that this summer by buying a. Byacre ultralight rollator which allows me to walk to the bottom of the medium sized garden after lifting it through the french window, then put on the brakes and sitting there till I want to move on. It's so light ( 4.8 kg) and folds into a carry case which can be slung over a shoulder. We've taken it by air and sea. I can only use it for a very limited distance but it's a help. I did use it to go to the opticians on Saturday because we had been able to park right outside.

I know you don't have that walking capacity @Evergreen but hope you don't mind this rollator information being added to your thread.

 

[Evergreen]

know you don't have that walking capacity @Evergreen but hope you don't mind this rollator information being added to your thread.

Not at all, @Binkie4, it will be useful for others for sure. The rollator sounds like a really good solution for you. It wouldn't be for me because I get dizzy quickly when sitting still, so the rests would do me in! I need to get there quickly and then lie back.

I am unable to use my wheelchair at home because we haven't organised ramps or paths and I can walk a certain number of steps in the house. I I enjoy our rear garden but could not enjoy it fully because my walking distance is so restricted and I couldn't reach the end of the garden.

I can walk a bit too - between two rooms basically, with a bed at either end. I was the same as you - I was able to get right outside the door, but then as the sun moved to the end of the garden I would just look at it wistfully. It took so much out of me to get there that we relied on piggybacks once in a blue moon.

The ramp at the front and level access to the patio at the back is unbelievable. But was also expensive.

One thing I have noticed is that I need to have sufficient energy to concentrate fully when driving my wheelchair. I consider it very easy to drive and manoevre in all ways. It rotates on the spot and attracts attention at its ease of use. If however I don't give it my full attention which takes energy, it is very easy to clip a door frame which rather spoils the impression. I only noticed this when I had had it for a length of time, and had become less careful, often when I was tired. I now try to anticipate possible difficult angles when approaching a doorway so that I line it up appropriately and enter smoothly. I do need energy for that. I would need to concentrate when using the path you have described. My favourite uses are gardens like RHS Wisley or National Trust properties where there is plenty of space.

Yeah, I'm really surprised by how much cognitive energy it takes to use. When I was out on the patio briefly yesterday during the adjustment session, I was looking at the path thinking "As if!" Even though it's generous on paper, I'll need to practise on the much wider part closer to the house until I can reliably move in a straight line.

During good weather, I should be able to park the chair in my living room - the second room I can get to, 2 steps from bedroom - which has a sliding door to the patio. That would maximise my chances of being able to use it. The chair will take up loads of room and I know I won't like that. It really is a little car. But if I have to walk to the hall to get to it, and then run the gauntlet of two doorways, I just won't use it, because it's beyond my capabilities. If I get better at driving, it might become more possible.

When we were planning the patio, we thought we were probably going way too big. Now I'm grateful for every inch!

 

[Evergreen]

Just looked up the Byacre ultralight rollator. It sounds brilliant, @Binkie4!

Carbon Ultralight

World’s lightest rollator at 4,8 kg. Optimized for city environments and travels.

shop.byacre.com

 

[Evergreen]

It is overwhelming! I seem to hit that wall after five minutes even though I'm not severely affected.

And hitting the wall entails going around in circles for a while until I finally recognise "I've hit the wall!" So I overexert for a while after hitting it because I'm dazed from the impact.

 

[Binkie4]

During good weather, I should be able to park the chair in my living room - the second room I can get to, 2 steps from bedroom - which has a sliding door to the patio. That would maximise my chances of being able to use it. The chair will take up loads of room and I know I won't like that. It really is a little car. But if I have to walk to the hall to get to it, and then run the gauntlet of two doorways, I just won't use it, because it's beyond my capabilities. If I get better at driving, it might become more possible.

There are difficult choices and trade-offs to be made in many circumstances with equipment I find. My first equipment choice was a luggie scooter, a total and expensive mistake. It was demonstrated in our house and got full marks on being able to handle a tight corner from the dining room into the hall and on being foldable and being able to be pulled along like a suitcase. As soon as I used it outside, I realised I couldn't hold up my arms to steer it so it was back to the push wheelchair. I do love my trekker, however.

With my ultralight, I hovered between it and a slightly heavier overland ( 6.7kg) which will manage more uneven ground, but am so glad I chose the ultralight because I truly can lift it down a step outside the french window with two fingers. That 2 kg makes such a difference.

However both my pieces of mobility equipment are in the end only as good as the energy I have to use them and I'm currently depleted.

 

[Evergreen]

However both my pieces of mobility equipment are in the end only as good as the energy I have to use them and I'm currently depleted.

Right there with you.

 

[Kitty]

However both my pieces of mobility equipment are in the end only as good as the energy I have to use them

Definitely!

Using my wheelie's much more demanding than driving. The terrain's nearly always horrible, the actions and movements of pedestrians are far less predictable than those of drivers, there's a lot more counterbalancing to do with my upper body, and it's waaay less comfortable than a seat in a nice warm van.

The only upside is that if some eejit on their phone walks into my powerchair, it's more or less guaranteed they'll come off worst.

 

[Evergreen]

An update on the wheelchair.

I’ve accepted that for me, using the powerchair is a special event. I cannot “practise”. It's a very demanding activity for me. It doesn't open up the world for me the way it does for some people. But I think I'm still going to be able to use it now and then in very rewarding ways.

Now that we have the patio, we have tried something different. My husband drives the powerchair to the patio just outside the sliding door in the second room I use. I take it from there and just do a little loop around the bench for fun and then go straight down the short path to the end of the garden, tilt back and enjoy some fresh air. So it’s all outside. I’ve managed that 3 times I think, without it causing a pain flare or PEM. I need to wait till after lunch – maybe to do with orthostatic intolerance – and have a long rest immediately after. And then wait weeks or months to do it again.

It works a lot better outside because I don’t have to navigate our narrow doorways. It’s a shame, because the house is not small, but the doorways are. Even the front door.

We finally got the handrail on the ramp at the front. So last weekend I went up and down that. That did flare pain, but I was already in a pain flare so I knew that would happen.

I think I actually am getting a little better at not weaving around like a drunk. Definitely gaining confidence, even though I’ve only used it a handful of times. I do hope I'll be able to get out a bit more over the summer.

To complicate matters, I now have not one, but two frozen shoulders, which really should be called excruciatingly painful shoulder. One’s 10 months in, and the other has just started. So my joystick arm now has another problem for the next year or three. But I finally saw an absolutely lovely shoulder specialist this week and got steroid injections on one side that seem to be having an effect. So next time they might do both sides.

Also got a new narrow transit wheelchair – it’s great, really slim, great armrests, comfy, but the wheels are so squeaky on our wood floor that I cannot use it. They scream. They look like they’re made from the cheapest, shiniest plastic possible. If you told me they were 3D printed, I’d believe you. Not a cheap chair. The retailer has been spectacularly unhelpful. So our choice is to return it, or get the wheels really dirty and see does that stop the squeak, and if it doesn’t, we’re stuck with a chair we cannot use. Neither of the other wheelchairs we use in the house squeaks on the floor. We've agreed with another retailer to buy another one, try it in the house and immediately return it, just so we can try another and see did we just get a dud. So we'll see.

So that’s an update on my wheelchair adventures. Hopefully this thread will be helpful to other people.