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 know that taxis are supposed to be able to take a wheelchair.
Unfortunately this isn't actually true. There is no national regulation on the subject. Taxis are licensed by councils and there are about 400 taxi licensing authorities in the country, all of whom set their own rules. It is fairly common that licensing authorities insist that hackney cabs are wheelchair accessible but not that private hires are but you'd need to check your local council's rules. Their licensing conditions should be on their website. Of course some private hire companies do choose to include at least some wheelchair accessible vehicles (WAVs) within their fleets and finding a trusted private hire company who will get familiar with the needs of a particular person and their wheelchair is often the best bet, but sadly that isn't always easy to do. Also, not all WAVs will take all wheelchairs unfortunately so it is possible to book an accessible taxi and then find you can't actually get in after all. It can be bit of a minefield I'm afraid.
I have a close relative who works in the WAV industry and knows a lot about wheelchair accessible taxis OP so if you have any specific questions on the subject please feel free to send me a private message and I'll ask. There are quite a few charities who support disabled people with their mobility and my relative is quite well informed about that kind of thing as well - if we can help at all drop me a line.

I think what they may be saying is if you get a wheelchair and a hoist to lift it into the car, this could give you more independence in that you could go out and about without needing your DH.
Whereas I know you are thinking if you can mobilise yourself better with physio you can gain more independence.

I don't think these things are mutually exclusive.

Yes, the point of a wheelchair hoist for someone who can walk a bit, is to lift the wheelchair into the car for you. It's to give you independence to go out alone.

If you're not ready for a chair, though, of course you don't have to have one.

It does sound as though the OT's overarching theme was that greater independence was possible for you, though. It's worth considering the degree to which you need your husband's constant presence to function. What would you do if he broke a limb, had to go into hospital or was in some other way indisposed? Having back ups available is no bad thing.

It sound like OP wanted advice how to make her body physically stronger.

OP got: advice how to minimise risk of injury from future falls & maximise OP's indepdent access to wider world.

The advice wasn't wrong, but it wasn't about getting stronger. Maybe a private specialist PT would be good for OP.

I agree that most of the OT suggestions are about giving you more independence with the levels of mobility/stability you have. I'm not sure that improving your walking ability etc is the role of an OT, more of a Physio

Mobility Scooters are another option instead of a wheelchair. You get both lightweight and more rugged ones.-6

A hoist to get the chair in and out of the car to go out alone is only useful for independence if the OP can drive. I'm under the impression from her posts that she may have had a brain injury, so her licence might have been taken away. Is this the case OP? In that case I can see a hoist and chair would be less useful.

hi OP@SneezeMcQueen ex-physio here! You must definitely request a physio assessment, it's actually shocking that you've never been seen by a physio following your injury, what were the Dr's thinking. With regards to your home assessment, both OT's and physios assess people at home, provide aids and equipment and give advice...particularly if you are at risk of falls, as a fall resulting in a fracture would set you back massively. OT's also assess for adaptations to make you as independent as possible and they want try and optimise your life and return you to activities/work etc if they are able. There is a sometimes a professional difference that, (plainly speaking!), physios sometimes want to make you work harder in the short term to allow you to do more in the future whereas OT's sometimes like to make your life easier! People who can walk can still be prescribed wheelchairs because the effort and risks of walking can be greater than the benefits of walking - so they might have been coming from it this way. Well done for all you are doing but hopefully if you can get some physio that would be great in realising your potential.

Running through this post quickly, I have read everything and I am thinking it through.

@123anotherday before I write this I want to be clear that although I am not going to post about my pre accident career. If this post wasn't already very outing it would be clear that I am very pro NHS. *
*
When first admitted to hospital it was at the end of Covid, they were still having plenty of Covid cases though vaccines had started to be rolled out for the elderly.

At the time there was no way that a physio, or anyone who was not a direct Dr, nurse, or cleaner would have been allowed on our ward without very good cause.

The type of head injury I sustained continues to improve over the first two years after the original incident. At the beginning they didn't know whether I would survive the night, eventually I could walk, only with significant support.

In an ideal time I would have seen a physio, this was not an ideal time.

Since discharge from hospital the follow up care has been poor. I understand why, though I would have hoped that it might have improved by now.

The DVLA have had my licence for two weeks. Before that I was allowed to drive, there has been no incident which has affected my driving since the head injury. I didn't drive for the first 9 or 10 months after the injury. I sent the licence off because at my recent check up I saw a different neurologist who insisted that I surrender it until they have completed further tests. I have had the tests and I am waiting for the results now.

I've got several auto immune diseases that affect my limbs. My condition varies wildly. One week I can walk 2-3 miles with pain but manage. The next week I can get out of my own house. It took a lot of getting used to, I was 34 when this started. I can walk a lot of the time, but I have learned to accept my limitations and use both a wheelchair and mobility scooter when they are needed. Not just when I'm unable to but conserve energy ABs make sure I'm safe. It's a mobility AID not only for crooked. This has bought me a lot more freedom than I had before , it's reduced the load on my family and I can go out and get involved in life without relying on others.

You need to get a grip and accept that you have limitations. Don't move to a bungalow if you don't want to, but get a state lift and use it . Get the wheel chair. Get a scooter and a ramp so you can get your life back. Stop being so stupidly proud as you are only punishing yourself and your husband.

It’s obviously entirely up to you what you do OP, but many of the OT’s suggestions sound sensible to me.

It also sounds sensible that you talk to your doctor about physio and whatever other exercise (hydrotherapy? A trainer? - do they do disability movement classes at your local gym?) that would help you remain as mobile as possible.

If you can’t move around without your DP being with you, that is really rubbish, you are an adult and you need your independence. You can get off road wheel chairs as PPs say, and having one would mean you could drive into town get in your chair and move about. Can you/could you drive BTW? Do you have an adapted car?

If you can’t use a chair at home so you can move about without your DP then I think a move to a disability friendly home is sensible. You are only 42, you have a long time left and your home should be a place you can be independent and move about.

No one wants to use a wheelchair or have to move from a house they like, but it is daft to view it as giving in - you can also stay as mobile as you can, it’s not either / or.

Your husband sounds like he is an amazing guy in many ways, but in others I don’t think he’s doing you any favours - of course he’ll do anything for you, but you only want him to have to do the minimal. I know he means to be kind and protective, but in actuality he is being selfish (in fact I do think he’s being straightforward selfish if he’s opposing a move.)

I also think a chair and being able to get yourself out / around the house, would mean you could work, which I presume you’d like to?

I suspect you and the OT rubbed each other up the wrong way - you have got yourself into a corner, she was probably frustrated and being bossy.

Some counselling so you can work through your feelings and work on how you can create the best life you can would probably be helpful.

Also - I am absolutely GOBSMACKED that you aren’t having physio

That cannot be laid at your OT’s door, but please go and see your GP - what are they thinking??

You are never going to get all the physio / other physical therapy you need on the NHS so I would free up some cash (sell a bit of land if you have to) to get someone privately too. Get the person most experienced with your kind of disability you can. It also sounds to me you need to be strength training at your local gym - but you need a full physio assessment and for them to talk to the trainers when and if they think you’re ready.

I do think you’ve been let down by the NHS post hospital OP, but equally you aren’t without resources (intellectual or financial) so please do get this sorted.

I am an ambulatory wheelchair and I have a few thoughts, if you don't mind my sharing.
Firstly, I very much understand not wanting to give up, being in a mindset of recovery, and so on. However, using a wheelchair, or a scooter, is not giving up. Walking is not in any way superior to rolling, it's just a different, and morally neutral, way of getting about. You can still keep fit and be a wheelchair user. I do both. Part of the benefit for me is that I'm not allowed to drive and would otherwise not be able to go out alone; I can walk less far than you but I also can't walk outside unsupervised due to drop attacks. The rollator idea is a good one and might get you used to the feeling of using more mobility aids, the problem is that they're not very easy to use on rougher tracks.
I would also say that getting a wheelchair prescribed on the NHS is like finding hens' teeth, so if the OT is actually suggesting that it may be funded at least partly, that's a strong suggestion that you do really need one.
If you have tracks etc in your area, a Tramper may be a good thing to look into. Many country parks and National Trust places etc have them, so you can try them out, and because of this they are often sold second hand, even for under a thousand. If you have a garage you could keep it in there, and not need a ramp, and be able to get out and about independently. An Omeo might be your ideal chair actually as they can do outdoor/indoor/ all terrain, and are designed to keep you moving without straining your shoulders, but they're ridiculously expensive and currently the only scheme available is Access to Work, which isn't available to you.
Btw, the hoist comment was referring to a hoist to lift the wheelchair into the car, not to lift you into the car.
Hope some of that helps. For me getting a wheelchair was a very pragmatic choice, but I know for a lot of people it can be more psychologically difficult. Letting go of the idea that it's always better to walk might help, though.

Or if you really are desperate to avoid a wheelchair, maybe you would like one of these https://www.thealinker.com/

I struggle to walk and use one crutch indoors and a rollator (4 wheeled walker with a seat) outdoors. I also have a mobility scooter.
It took me a long time to accept that I needed these things but now I have they are very useful.
I totally understand you not wanting to use a wheelchair if you don’t really need one. A while ago I was being collected by hospital transport (outpatient not an emergency) and the driver wanted to put me in a wheelchair for speed to get me to the ambulance. I refused because I knew I could manage and I would have felt a complete fraud being pushed plus I am fiercely independent.
I would suggest you think about a rollator and a scooter as a compromise. My scooter copes with gravel tracks but I would really like to buy a Tramper which is an off roader scooter. I have tried one out on the New Forest and it was excellent. They do come up on ebay as a cheaper option.
Would you qualify for PIP? You can use the mobility element to fund a scooter if you wish.
Or you could look into a charitable grant to fund one. A friend of mine was bought a scooter by a local charity which was a great help to her.

If you moved to a bungalow you could still walk around at home. You could use an electric wheelchair so you could go out independently without your DH. It would allow your DH to not have to worry about you.

All I can say is a relative who’s had a stroke has an electric wheelchair which is able to cope with slopes and flat surfaces. He also has cerebral palsy.

With his chair his wife can drop him into their nearest city and he spends the day there at various groups and is then picked up later. There are also wheelchair accessible buses in the city and Dial a ride though he uses neither.

I’d look into getting an electric wheelchair.

@CrocusSnowdrop of course I don't mind. Thank you for sharing your experience, I have read your words, please do not think that I am dismissing your experiences. I am listening.

If I could not walk I would use a wheelchair, I would not be upset by it or embarrassed.

When I was hospitalised it was towards the end of Covid. IIRC the elderly were being offered vaccinations by the time I left. We including patients who were dying were allowed one visitor total throughout my stay.
Unless you were a Dr, a nurse or a cleaner no clinical support was available, unless it was an emergency. I believe that is why I did not have physio when I was in hospital.

After hospital it took me some time to adjust to the changes to my life. It didn't occur to me to ask for physio, I was too busy staying alive.

Yesterday, just to see whether I could, I walked for a mile independently. I carried a small rucksack. My husband was working elsewhere, so I went for it, and I did it. My legs ache today 😊 even so, I did it.

I walk around the house. On dizzy days I sit on the stairs to get around, this is a precaution.

My GP is calling me next week, I will ask for a physio referral. As the title of this post says; I can walk, I have always thought that physio, and possibly private strength training, would enable me to walk.

The disability I have is not degenerative.

We do not need to sell any land to pay for physio, a wheelchair or for any other reason.

In the past we have discussed building a house for ourselves on land we own, we would not necessarily sell our current house to do this.
My husband is not moving out of this house at the moment. He will not entertain the idea.
As things are currently, I think he is correct.

@greasypolemonkeyman I am sorry to read of your disability. It sounds incredibly challenging, your condition is not similar to mine. To be very clear: I am not punishing myself or my husband. Like you and many others on this thread, we are trying to find our way through a difficult situation. That means doing things in the way that suits us both.

That should say:

I have always thought that physio, and possibly private strength training, would enable me to walk more.

I understand how frustrating this must be for you, yet I also understand why you've been given some of the recommendations that you have.
My husband is disabled. He still has some mobility, but can't walk very far and only with the assistance of two sticks. He is also susceptible to falling, so is usually accompanied. He also has a mobility scooter and a rollator. He doesn't always use them, as he likes to keep mobile as much as he can to retain muscle tone, but there is an increasing number of situations where he needs them.
We live in a three storey house. Again, people have suggested moving to a bungalow - I think I'm more open to that than my husband! He says he will go down the stairlift route when it becomes necessary.
I do think OTs can be very limited in what they suggest. They seem to forget that, as you said, people adapt to their disabilities and have their own methods of coping. I also think there is a huge psychological adjustment to be made when you use aids such as a wheelchair, both in your perception of yourself and definitely in other people's perception of you. My husband once described it as a sort of grieving, an admission of defeat, when he realised that one stick was no longer enough, and if he was going to walk he needed two sticks. Similarly when he had to use a mobility scooter.
I think you are doing the right thing in wanting to exercise. It may be worth asking to be referred to a physiotherapist who can help with exercises targeted at your specific areas of concern. Good luck!

Just seen that you're already considering a physio - they really have helped my husband.

@Twiggydances everything you have said makes complete sense.

I'm sorry that your husband is disabled, I understand your perspective and his, which is not to say that they are at odds with each other.

The grieving? Certainly, I grieved for the life I had before, I lost my career, at the start I couldn't speak, I couldn't move, I put on a lot of weight (which I have since lost), our adult DCs reacted in ways we wouldn't have anticipated. I woke up in ICU and every day presented a new, Kafkaesque nightmare.

So I do understand your husband's grief wrt walking aids. Though sticks can look very distinguished.

I really do wish you both well.