Told to use wheelchair, I can walk

[SneezeMcQueen]

Two years ago I was involved an incident which has left me disabled.
I'm going to be vague about some details as this is outing.

Recently I saw an OT. My disability can cause me to fall, but there is nothing wrong with my limbs. I can walk unaided, though not unsupervised .

The OT was very assertive. They insisted that I should have a wheelchair and some other adaptations that DH and I feel are unnecessary because I can move, I can support my body, I still have some physical strength.

When they were here I was clear with the OT that I want to start exercising again. I asked if they could support that.
Instead, their recommendations would reduce my independence.

If it makes any difference I don't have carers, so this is not a health and safety recommendation, designed to protect anyone helping me. If that makes sense?

They also said that we should move into a bungalow. We own our home, we do not want to move, I can and do manage the stairs, sometimes I sit on them to get up and downstairs, but I manage it.
Alongside the move to a bungalow, the OT also said that we could use the money we make from the house sale, a bungalow would cost less than our current home, to pay for me to take taxis to get out more. It seems to me that is overreaching?

I feel like I have stepped into a dystopian reality.

I'm not in denial, after a challenging two years of adapting to my disability I am sharply aware of the things that I now can and cannot do,

Now that I have seen the recommendations I am feeling very low.
Is it appropriate that an OT should write a report that, rather than supporting my independence, suggests adaptations which would make me more dependent?

I'm going to be annoying and ask some questions.

I can walk unaided, though not unsupervised, who supervises you? Is it DH? Are you dependent on DH?

Do you ever go out on your own?

Owning a wheelchair you can use independently does not stop you getting up and walking when appropriate.

You need to start your own thread

@NerdWhoEatsMedlar do you use a wheelchair? If so, please can I ask you some questions about it?

Am I dependent on DH? Well, if I left him which I have seriously considered, for his sake, I would have some sort of care package.

Yes, DH supervises me. He is ok with this, I hate it. This is not what I wanted for him. It is the reason I have considered leaving, for his own benefit. DH will stubbornly not consider a separation.

I don't go out on my own. The fear is that I could be out walking, I could fall and, like the original incident, come to serious harm, except this time I may be in a field or on a path and not be found.

To get to the nearest town I would have to get a taxi. I could walk around on my own while I was there. If I had an incident in town someone would call an ambulance, which probably wouldn't be necessary and would cause a lot of hassle and unnecessary public service expense.

Around the house I can move around ok. It would be difficult to get out of the house in a wheelchair our doorways are either too narrow or the door has a lip to walk over.

I understand that owning a wheelchair does not mean that I have to use it. For my part I want to walk as much as I can. I'm not being dramatic, I have lost so much I want to hold onto the things I still can do.

Unless it is a very expensive wheelchair it wouldn't be much use on the tracks or fields here and a large electric one would be difficult to get into a taxi. I know that taxis are supposed to be able to take a wheelchair.

There is no public transport here.

@Nas16You need to post a seperate thread

Most wheelchair users are ambulatory, and most don't use them at home. So it's not that wacky a suggestion.

Before I had mine, I had severely restricted myself from doing my favourite things for several years (museums, malls, the main work campus were all beyond me).

The car problem can be solved with a hoist. Whether you'd want a second, off road, chair is up to you.

Don't dismiss the idea out of hand, though. It might be good for your independence.

@SneezeMcQueen I find it very strange but obviously I don't know your whole situation.

If it helps, mum had to see an OT after a fall and a stroke. Both times they were keen on her regaining some physical ability, within the bounds of realism.

She was referred for physio on the NHS and that went well. Is the OT trying to cut back on referrals?

She is 85 now so having adaptations in the house eg rails, was something they recommended. But they are happy for her to walk without her stick within the home. She does have a stairlift as it would be impossible for her to manage stairs without that. We paid for it though - I don't know what advice they might have given if we asked for funding for it. But it's obviously very expensive to move home!

In general - yes, I am puzzled that an OT would not be on the side of you finding ways to increase your independence. A wheelchair might be useful as a back up but it depends how you feel. Mum wouldn't want to go out in a wheelchair. It's possible that she will change her mind as time passes but I couldn't be in charge of it due to an old injury.

I don’t know how to

@SneezeMcQueen is it possible that the OT is concerned about a deterioration in your condition, which would mean you become ‘trapped’ in your current home and that’s why they are suggesting a bungalow? If so, I can see that making the choice to find and purchase (plus sell up) a suitable bungalow or adaptable property (stair lift etc?) would be easier to do now, rather than being rushed into a move in later years. Now you have time to look for the right property/location, in 20years you might have to compromise too much /be priced out etc.

I do get that is a sucker punch, it’s grieving for what we can no longer do and what we might not be able to do. We are seriously looking at a bungalow due to my health, and I feel as if I’m giving up, even though logically it should help me live in less pain, less restricted as stairs are an issue etc. I might look and be old but I don’t feel it and currently am inwardly swearing at my knackered back, hips and knees as well as at every bungalow we are viewing!

The wheelchair - as pp mention, you don’t have to use it, but would it be useful if you do have a long walk or day out? Would it grant you some measure os independence and confidence if you were out alone? Or maybe a Walker with a seat to you could opt to sit and rest every so often? Also easy to fold up for car journeys. Again I wonder if the OT suggest this as a preventative measure ie: prevents a fall which could incur further damage and restrict your movements.

You don’t have to do anything today or this week or even this month. Or ever. You could opt to redo your current home to make things easier. But allow yourself time to get to a place where you can see the suggestions as an accessory to further your independence rather than taking it away.

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The OT is trying to increase your independence though, because right now you are entirely dependent on DH. With a wheelchair you could get out and about on your own no?

OP

I'm sure you know what "recommendations" mean, so it is YOUR choice.

Who requested the ot assessment?

What was you expecting from the assessment?

Have you had physio therapy

Are you on a liability benefit is it high or low rate

what is your prognosis re mobility, aboiuty to stand, get in and out of chair/bed etc

Ideally what do you want?

if you are getting disability benefits, could you use them for private physio?

re you current home, you could put a lift in it and stay on until you need one then get one - and or have a toilet upstairs and one down if not already the case

I'm reading that and reducing the risk of falls and or injury - it is op's choice as they are only recommedations

I'm sorry you had an accident OP. I too am confused by this though, even with your explanation! I can walk unaided, though not unsupervised
Is DH supposed to catch you if you fall, warn you of an obstacle beforehand or provide some other use as being your supervisor?
I'm surprised the OT didn't suggest a call alert type alarm, meaning you can go out and about on your own, into your garden etc and IF you needed help, it can be set up to call DH/family/friends/neighbours etc.
Would a forearm walker support you more to help mobility?
What benefit would the OT have for making you LESS independent?

Yes, DH supervises me. He is ok with this, I hate it. This is not what I wanted for him. It is the reason I have considered leaving, for his own benefit

Or you could move to a bungalow and use a wheelchair so he doesn’t need to supervise you all the time. That would seem somewhat less dramatic than leaving him.

OP, I'm a wheelchair user (and about to.go to bed and also don't tend to return to threads, but you can DM me if you want to)

Many of my disabled friends use chairs because they're at risk from falls, some have POTS etc.

Having my chair makes.me slightly more independent than without it.

The transport issue sounds crap, we have buses and a train station but both are shit here so I'm reliant on my car, but only if I'm well enough to be safe driving.

If they'll fund the chair etc, take it - you don't have to use anything but having it there, you may discover things can help you become more independent.

You can put a wheelchair voucher towards an electric one. Those make life so much easier. I miss mine. It died a death.

@LiterallyOnFire we live 35 miles from the nearest museum or mall. Even when everything was fine we might go to the nearest ones once a year. When our DCs got older we would take them to a larger city, either in the UK or abroad, for a week or long weekend twice a year. That's when we did the museums, galleries and malls.

Our nearest town has two supermarkets and a handful of shops. It's a pretty town, definitely not a central hub 😊.

I'm unable to work any longer, I would love to be able to.

Aren't wheelchairs crazy expensive? Particularly off road ones? We are not poor, we live well, though we did suddenly lose my salary, which was significant. Spending the equivalent of small car money on wheelchairs would not be easy.

I'm not being argumentative; why would I need a hoist? I can get in and out of a car easily.

For me, independence would be receiving help to become physically stronger and fitter via exercise. I would use a stick, or sticks plural if I had to, because that would keep me on my feet.

@EmmaEmerald I was involved in an accident, I didn't have a stroke or other physical event. I'm saying this because I'm not at risk of a repeat. Unfortunately, the accident did leave me with ongoing physical symptoms which flare up. My 40th birthday was when I was in hospital, I'm definitely not young. From a medical perspective I'm not old either.

The accident happened towards the end of the pandemic, I was in ITU, then on a ward for months. Since the accident I haven't had any physio, not in hospital, not at home. My strong feeling is that, with some support I could improve my physical health and mobility. I'll ask my GP for a physio referral.

I'm not sure whether the OT is trying to cut down on referrals. There could have been any reason, though they were sharp with me from the moment I answered the door to them.

I've got no qualms about going out in a wheelchair if that's what I needed. The thing is that I'm not sure that it is what I need. If I could rebuild my fitness and balance I could become more independent under my own steam.

When we go out together DH and I have got walking so that he is supporting me, without looking like it, down to a fine art.

The OT did suggest I have a stairlift installed, at their expense. When I said that going up and downstairs was usually the only exercise I get most days I showed them how I traverse the stairs sitting down.

@Alphabet1spaghetti2 as I said up there ⬆️ it is unlikely that my condition will deteriorate. In fact, it continues to improve, although the rate of improvement is slowing now, some things are still getting better. The OT should have known this, although I'm not sure that they did and when I tried to explain, they made it clear that they weren't listening to me.

I'm not being that person in writing this, though I hope it explains why we are in no hurry to move at the moment.
It is unlikely that we will ever be priced out of a smaller bungalow, not least of all because we own enough land, in a desirable area, which does not have an agricultural tie, that we could sell for housing. This has long been our plan if we ever sell up. We would get planning granted first.

It is possible that we could build a bungalow on our own land, if we do one day decide to move into a bungalow. Though if we do build a bungalow I'm going to push for something along the lines of Southfork (the house in the soap opera Dallas) 😄.

Besides, we love our current house. We loved it when we first looked around, and we love it even more now. It's where our DCs were brought up and Trigger Warning one of our DCs passed away as a child. We scattered their ashes in their favourite spot in the garden.

As described above, I have found a way to get around this house safely under my own steam.

Although your situation is different from ours I am sorry that you have to move too. I'm sure that you don't look old and I can definitely understand feeling young inside. I feel the same way, somewhat battered by life, still I feel like I am 24, not nearly 42 😊.

Also I understand that a bungalow feels like giving up, for me the wheelchair feels not so much like giving up, as giving in. From my outside perspective, you say that living in a bungalow would make your life easier and less painful, if that was the same for me, I would be considering a move. Whatever you decide, please look after yourself. You sound lovely, pragmatic too.

The grieving for previous you? I understand that completely. Overnight my life was stopped in its tracks; my career, my hobbies, my social life. As I recovered physically I deteriorated emotionally as I realised the implications.

Life is supposed to begin at 40.
When I left hospital the Dr told me that on the day I was admitted they didn't expect me to survive the night. Unbeknown to me at the time my family had gathered to say goodbye. Then they didn't expect me to be able to walk, talk, feed myself or generally do anything. I'm a regular miracle 😳.

Having made this much progress already, I do have to wonder whether there is room for further physical improvement, with intervention.

The wheelchair and me: firstly, it hasn't been established that I need one. As I haven't yet had any physio, or other physical help, it is possible that I could get stronger and more capable. Until I am sure that I have reached the limit of my physical improvement, I would feel like I am giving in. I didn't progress this much without stubborn determination to improve.

Every other day I do 30 minutes - an hour of yoga and exercises on the floor. If I could have physio I would hope that there is scope for strengthening myself further. As long as someone is with me I can walk for 3 miles without a problem. It's not much, though it is not unreasonable either.

Given all of this, which is written in my medical file, I thought that the OT may be able to support me.

You're right, I don't have to have a wheelchair this day, week, month or year.
If physio doesn't change anything I will consider it, though a Zimmer Frame with a seat sounds like a good option.

When we go out together DH and I have got walking so that he is supporting me, without looking like it, down to a fine art.

This is important. Has anyone explored the ongoing physical strain on him, through having to support you? What if it eventually incapacitates him? And while he clearly has no wish to leave you, has he fully processed this now lifelong obligation to walk beside you physically forever? If you’ll forgive me (and I am sincerely sympathetic to what the accident has meant for you) it doesn’t seem fair to make him perform his marriage vows in such an all or nothing manner. Why not give him the option of sometimes being allowed to support you morally, emotionally, whatever, without having to be your one single physical aid every time you leave the house? Why not think of the wheelchair as support for him? (And for your marriage.)

Wheelchairs do not necessarily cost second hand car levels.

I'm an ambulatory wheelchair user in that I can walk a bit. I also fall a lot and I don't have anyone watching me.

I have this one which cost 710 pounds. You can get second hand ones cheaper on eBay.

It can be folded to go in the car and means I can go around the supermarket etc and go shopping.

She will almost certainly have made the recommendation to reduce the risk of falls - potentially from a fall you could break something.

https://www.amazon.co.uk/Livewell-InstaFold-Electric-Wheelchair-Powerchair/dp/B079DTVDYR/ref=mpssa112sspa?crid=5XM9M9FH6MCQ&dib=eyJ2IjoiMSJ9.Qgks4BARSwJM7ZwIA1TYmsTY9Hj7a0dGXOTvId1UCdjrtF04PKZsMgqTjmQduGiaQiWDLyp459u8t-TjlUYed2OLz32xxm3AFEaD4Y6BYtG7gYCG-6sl8naXpJ1eqFtZqtPJozqe22Mu-2T6tfDyNapvjw7naasKM0tyFVcMoVHGJw43XuynQq77nn1YOqp5uUx9uXjym9TZGoUtw8bg.95xAfpAjM9T8pZYIMmEzKjTsoKZ7RsSm3Em8o-5RKhk&dibbtag=se&keywords=folding+electric+wheelchair&qid=1710904221&sprefix=folding+electric+wheekchair+%2Caps%2C64&sr=8-2-spons&spcsd=d2lkZ2V0TmFtZT1zcF9waG9uZV9zZWFyY2hfYXRm&psc=1

@Neverpostagain no. See my post up thread about using a wheelchair in the area around or near my house and about going to town.

@DistinguishedSocialCommentator

• my assigned social worker.
• support to continue my physical improvement.
• no.
• no.
• I haven't been given a prognosis for two years.
• I already stand independently. I get into bed and out of it. I can get in and out of a chair.
• I'd like a sizeable lottery win, thanks.
• no.
• see my post about our home. We have a bathroom and separate loo with sink downstairs. Upstairs we have plenty of bathrooms.

@DSD9472 DH does not catch me. He does ensure that if I drop I am not injured, or that I receive urgent care for injuries. My eyesight is good, I can see obstacles. A call alert would have been a helpful suggestion. A forearm walker would be much more helpful, in combination with providing physio. Honestly? I have no idea of their motivation. My best guess (and it is a guess) would be that they could give me a wheelchair, tick a box and take my file off of their caseload.

@HeddaGarbled DH does not support me all of the time. I can and do walk around our house unaided most days. I don't need to be living in a bungalow for that.

I'm not going to @ you glittercunt I don't have POTS. If they are willing to pay for a wheelchair I can use outside of our home e.g. a powerful one, I'll take it.

Re physio, last time I looked into it referral to nhs physio is via your GP.

The entitlement at the time I did it was 4 x 1 hour sessions.

I couldn't walk at all after my accident and after the nhs physio I organised my own private physio. I did an hourly session a week for about two years. That got me walking a few steps.

You might also be entitled to hydrotherapy if your local hospital has a pool. Worth asking your GP.

“Every other day I do 30 minutes - an hour of yoga and exercises on the floor. If I could have physio I would hope that there is scope for strengthening myself further.”

In all honesty IME if you can do that, then it’s pretty unlikely seeing a physio will help you in the way you’re thinking it will.

But phone your GP - in my area you can self refer to physio at the GP’s surgery, but even if that’s not how it works in yours it’ll more than likely be through the GP.

I’d assume the OT’s are thinking having a wheelchair would make more things available to you, not that you’d always be using it instead of walking.

I have a back issue that is usually temporary but for me has lasted about 2 1/2,years, I’d use a wheelchair if I had one for some of the things I used to do that are currently impossible for me to do, not for the things I’m currently managing to do walking... if that makes sense?

@BlossomBlossomBlossom I agree with you and you are writing almost exactly what I say to DH all the time, there is a huge disparity in size between DH and I, I'm the small one. DH is very physically fit and strong. He has not noticed any physical impact as a result of helping me. He has annual 2 day full health check ups via his work, he is due one soon, they check everything.

At my insistence DH had psychotherapy around 8 months after I had the accident.

DH and I have been round and through all of the implications of my disability many, many times. From every angle.

When you wrote about not taking his wedding vows so literally I smiled. That is almost exactly what I say to him. His response is always that he said goodbye to his wife just over two years ago and that he can decide how much support he gives me and that he wants to spend every minute with me that he can. If it becomes too much he will stop, but it won't become too much and he would prefer it if I would stop asking.

DH is more insistent than me that we stay in this house and that I don't use a wheelchair because he knows that I can walk.

@Octavia64 and the off road ones so I can go out locally?
I'll try the NHS physio first, then look into a BUPA one. I can walk, I need to do more of it.
My swimming is good, I have never had an episode when swimming. I'd love hydrotherapy.

@tabulahrasa it does make sense, yes. Honestly, who knows what the OT was thinking? They didn't explain anything to me.
As they came to our house they know that I could use a wheelchair on the driveway and that's about it. I wouldn't be more able to be independent with a wheelchair.

Thank you for the physio information. Although I do yoga my problem is muscle wastage. I had to lie almost entirely still for 8 months.

I'm going to sleep now.

You can buy wheelchairs marketed specifically as off road but most wheelchairs will cope with a certain amount of off-road.

In general they all have problems with gravel or scree because their wheels just spin (that's all kinds of wheelchair).

Mine, which was not marketed as an off road one, is absolutely fine on grass. Mine is folding lightweight electric wheelchair which meets the flying regs so I can fly with it.

The issue with most wheelchairs off road is the question of slopes, and that comes down to power. They are all ok on the flat. The more you want to go up steeper slopes the more powerful wheelchair you want.

These days you can get tri-rides which clip on the front of manual wheelchairs. My DD has one of those. She uses it to get around her uni city and it has a top speed of 30mph so it is pretty powerful.

www.trirideitalia.com/en-gb/

“Thank you for the physio information. Although I do yoga my problem is muscle wastage. I had to lie almost entirely still for 8 months.”

I’ve had exercises from physio for stretching my back and trying to support it and then exercises to improve movements in my leg after I lost all use of it for a while.

But not general fitness, which I’ve also lost a lot of - for that they told me to join the local council run gym, they have classes aimed at people recovering from injuries or older people.... and told me to walk.