Wheelchair tips for a newbie

Wheezy

Hi everyone,

Until 18 months ago I was working in an operating theatre. I went into shielding (severe lung issues) and during that time ruptured a disc in my spine which has left one leg almost useless.

I have no function below the knee (no reflexes there either) and my knee joint is unstable - it either buckles forwards or bends back due to my hypermobility. 

So, in that time I have gone from an AFO and two crutches (where I am currently) to having been fitted for a KAFO and having the OT telling me I should be using a wheelchair when I'm out and about. We aren't sure if I'll manage with the KAFO, they are apparently quite heavy but at least won't buckle on me.

So, I'm trying to get my head around everything and was wondering if any experienced wheelchair users had any useful advice or tips for when I start using it - the wheelchair has been requested, but it could be a while before I actually get it.

Apologies for the massive ramble!!

Danielle_2022

Hi @Wheezy,
I'm primarily a power chair user, are you looking into getting a manual? My first tip in that case would be to invest in some gloves because the movement can sometimes be rough on your hands! Whatever chair you end up getting, I'd also encourage you to make sure that you're comfortable in it. These things are often so individual and can take some time to get right -- don't be afraid to try a few out and ask for adjustments. 

How are you feeling about it emotionally? It's definitely not always an easy journey and I want to create a space where you feel comfortable talking it all through, even when it's not pretty. Either way, do keep us updated with how you're getting on

janer1967

Hi and welcome to the community 

If its a manual chair through the NHS it won't be the most comfortable so you may want to invest in a better cushion for comfort . And yes gloves are highly recommend 

I would also work on your upper body strength as it is quite hard to self propel . 

Be mindful of limitations when in a chair eg access to buildings , uneven surfaces,  kerbs , hills , access into other peoples houses 

Personally I find manual chair great indoors but if you want to go out independently you may need electric chair 

Wheezy

Hi @Danielle_2022, 

Thank you so much for taking the time to reply - it makes a huge difference.

It will be a self-propelled chair (NHS supplying), so gloves are a great idea, I'll definitely get a pair.

Emotionally, it has been difficult, some days more so than others. I talk to family and close friends, but they can't understand like other disabled people would.

Since I had to give up my career, I now have my own business creating beaded jewellery, and most of my income from that comes from selling at craft markets, so being able to still do that is vital. It doesn't pay the bills yet, but I'm hoping I can make something of it.

Most of the markets I attend are on grass, so I might have to look into getting a chair which handles grass/gravel better.

Su x

Wheezy

Hi @janer1967,

Yes, it's a manual through the NHS. Definitely looking into getting a good cushion. There seems to be a wide choice (foam, gel etc), is one better than the other? 

The OT is going to keep in contact and see how I get on with the manual chair.

Danielle_2022

@Wheezy,
You're more than welcome -- it's what I'm here for! I totally understand what you mean about other disabled people GETTING IT more than non-disabled family members or friends, despite any best intentions. It can definitely be a lonely experience at times, but that's why forums such as these are so valuable. You're never far away from people on similar journeys .

Another thing that I forgot to mention for manual wheelchairs are wheel covers! Oh my goodness, you can get some beautiful ones. It's something that I'm very jealous of, actually ! The most famous example I can think of is Izzy Wheels, though you can get some on Etsy, too. They're quite pricey, so it's more of an investment than anything else, but I've always thought that I'd have felt more comfortable in my wheelchair from the beginning if I could bring some personality to it. 

Here if you need anything

janer1967

@Danielle_2022 I think not certain that if it is a nhs chair they won't allow any changes to the chair I don't know if wheel covers would class as this but the NHS are quite strict 

@Wheezy a firm cushion is best make sure you get correct measurement of your chair seat 

I'm not trying to be negative but unless you are very fit and have good upper body strength you will struggle to self propel outside for any sort of distance and hills and inlines are extremely hard 

Lots of places have ramps but if they are long sometimes too hard to get up and control going down 

In my experience manual chair out and about are fine if you are being pushed by someone.

Danielle_2022

@janer1967,
All good points. I tried asking Google about wheel covers for NHS chairs and didn't get much of an answer, so I guess it's something to enquire about when the time comes to get one.

I also totally agree with your observations about manual wheelchairs -- one of the reasons why I can't use one is because I'm simply not strong enough, but I would hope that all of this is discussed during assessment (I did ask if I could get a manual last time).

I spend all day in my wheelchair and therefore my cushion was custom to be extra supportive and accommodating to the different lengths of my legs etc. I think all will become clear after you have properly tried one out, @Wheezy. Only you know your body and what works best for it and I look forward to being updated when you know more. I hope that your team will keep the option for a power chair open, too

Wheezy

@janer1967

I do have quite good upper body strength and am used to moving and positioning anaesthetised patients for surgery.

The OT wasn't sure what was best without giving it a shot and has given me her number so I can call and see about changing to a powered wheelchair if needed.

janer1967

That's good then try it and see how you get on 

Nhs criteria for power chairs is also quite strict 

Tbh I have had issues with NHS wheelchair services and now purchased my own manual chair and was gifted my power chair by a friend so no longer use nhs service 

But not all are bad depends on your area etc 

MissMarple

Can you perhaps hire a manual wheelchair for a few days? E.g. Red Cross offers them for £17.50 per week. So you could have a feel, perhaps trying to go out for a ride to see how you cope distance-wise.

janer1967

@Danielle_2022 just looked at izzy wheels wow think I might have to treat myself they are amazing thanks for telling us about them 

Wheezy

@Danielle_2022 those wheel covers look awesome! Totally my thing! My AFO and new KAFO are patterned 🤣

@janer1967 does the fact that you've bought your own rather than using the NHS wheelchairs put you at a disadvantage for things like PIP? They told me that since I didn't get my crutches from a physio/GP, they couldn't be sure I was actually in need of them. I would normally have been issued crutches but this was around October 2020 when nobody was being seen in person.

janer1967

It could I suppose but I have a ot assessment report stating I am wheelchair bound and do still have my NHS issued chair and pip had copies of these 

I'm my case they can't really dispute my need of a chair as I am an amputee so pretty obvious 

You might have a lot better experience with NHS service than me see how it goes no point in funding your own if you don't need to 

The wheel covers on easy are lots cheaper but prob not as good designs . From reading they just strap on so should be OK you can take them off when they come and service chair etc 

Danielle_2022

@janer1967,
I'm so glad that you like the wheel covers! Please send me pictures, if you do get any. It would be lovely to see

@Wheezy,
I also agree about NHS services. It's a tricky one. I'm having a slightly similar issue at the moment. I recently had an appointment with an NHS physio that was incredibly traumatising, but it's been recommended that I see her once more to test out some equipment that the GP would need to fund for me. The private physio that I see doesn't have access to a specific stander I'm looking at, so it's about "proving" to my GP via the NHS that it would be beneficial to my overall health. So much red tape. I hope that you can work your way through it