wheelchair.

[Woollover]

my walking is v limited. I have a mobility scooter to give me sone freedom but am thinking of a wheelchair so my husband and i can wander round town together which at mo we cant do. Internet shows mixed views . So… will using a wheelchair to get out more make my fnd worse? I have had v poor mobility for 2 1/2 years now and am so fed up!

[HappyGardener6]

Hello there! I totally sympathise. I was not deemed worthy of a wheelchair because I have fnd, but I also have me/cfs and the impact of walking any distance can last for days. I have a bit of an issue with neurological physio, as in my area this seems to be their stance, but I was discharged after two sessions! They need more training and more staff (of course,) Taking the view that wheelchairs are unhelpful does not deal with the whole person and the impact on mental health and relationships. I have my mum's old wheelchair and we now put it in the car if we are going to town andI guess I feel less of a burden, although I wouldn't say we were beasties!Do what makes it easier for you to cope with this under supported condition and I'll think of you on Monday when the wheelchair comes out for a trip to town! Good luck and best wishes.

[Woollover in reply to HappyGardener6]

Bless you for your support. Thankyou☺️

[Alienbunnies in reply to HappyGardener6]

I genuinely think that if a mobility aid enables you to do things that make you feel a bit more normal, that in turn boosts your mental health and takes the focus away from FND a little because you have more to talk about. Trying to “manage” without any aids has left my 18 year old daughter housebound which has made her very sad. She now has hiking poles which enable her to walk a little further, but she wants to do more (Christmas Markets etc), so we’re getting a wheelchair for that reason. She can get up and wander and then sit when she’s tired.

She was told in no uncertain terms by the OT & Neuro physiotherapist (just the one session before discharge here) that she must not use mobility aids or she would rely on them and not get better.

Enjoy having the freedom of a wheelchair - you will enrich your life by having it. 😊

[210272 in reply to Alienbunnies]

I've been shamed for using mobility aids (a walking pole) and see this as a form of ableism. It's utterly hilarious (not) when the person doing the shaming is wearing a mobility aid IE a pair of glasses 👓. Your daughter only having one session with the OT and neuro physio is bonkers - no wonder only about a third of people diagnosed with FND have a good outcome. I know resources are limited but that's making me fume on her behalf - and yours.

[Alienbunnies in reply to 210272]

It is so frustrating isn’t it?

The Neuro physio said “You look like you’re doing the right things so I won’t need to see you again. Just keep doing what you’re doing.” And ever since then her walking has declined.

Yesterday we managed to get a second hand folding wheelchair from a charity shop for £60. It’s in great condition, so we’ll use that as an experiment first to decide if we want to buy a better one.

[Woollover in reply to Alienbunnies]

Well done on getting a second hand one. We borrowed one for a while but had to give it up. I don't enjoy being in a wheelchair cos i find people treat me differently but the lack of freedom is affecting my mental health so i have bitten the bullet. FND is horrid and life changing and adding a sense of shame to the mix is not helpful as i am sure many others have found. Roll on the time when we are treated with dignity not dismissal!!!!

[210272 in reply to Alienbunnies]

I'd ask for a referral to a different physio since clearly the advice given by the last one wasn't accurate or helpful when it comes to empowering people to better health. Totally understand why you've got the wheelchair and I hope it lifts your daughter's spirits to get out and about more, especially in the run up to xmas.

[Alienbunnies in reply to 210272]

Ha, well there’s the thing! We asked for a referral and they reviewed it and said they recommended a different course of action as she has (drum roll) FND!!! If I didn’t laugh I would cry.

We are paying for a private Neuro Muscular Therapist, so hoping that will help.

[210272 in reply to Alienbunnies]

Oh my days ... that's all too familiar to me. It's rotten that you are having to pay for a private therapist and I'd be inclined to let both your MP and Jon Stone know that this seems to be your only option. I think a really good paper about care gaps and recommendations for people with FND is long overdue and we also need a deep dive into a) how this diagnosis is given (since there's massive variability and the advice given to doctors is also highly variable) and b) the barriers to reporting a misdiagnosis of FND (well, I think we know what most of them are, we just don't know why they are still in place) which is still a frequent occurrence amongst people with rare or less common conditions.

[Lady4 in reply to Alienbunnies]

I am paying for a private OT for emotional and sensory assessment, which will help re ASD referral and EHCP re school (think I have the initials correct :-).

[Lady4 in reply to 210272]

My son only had one physio following diagnosis of CRPS and one neuro physio because I was able to self refer back and asked for neuro physio. Rubbish isn't it.

[Alienbunnies in reply to Lady4]

Yes, it is rubbish (but I usually use a stronger word than that! 😂)

[Lady4 in reply to Alienbunnies]

I have shared a link previously about the use of aids, most the time they aid in recovery, so they are wrong to say that. That said, even my Dr wasn't impressed when I brought my son to an appt in the wheelchair. Can't recall if he was suffering from Osgood Schlatters disease or CRPS at the time but either way they need to avoid voicing their opinion, esp if was a one off or for ocassional use. He has used crutches in the past two, from recollection when one of this legs was numb (I think, a while back).

[Shimmyaway]

I have only minimal experience of wheelchairs, but think that it's worth considering , if it is a manual wheelchair, the toll it might take on the person managing it, esp if they have health issues themselves. Hospital volunteers are not allowed to push wheelchairs, because of lack of training. If all is well, then enjoy your trips out.

[Lady4 in reply to Shimmyaway]

Its not rocket science when it comes to pushing one. Make sure you use the breaks properly and move the foot rests out the way when getting in and out. When volunteering, I have pushed them.

[tabey]

I use a wheel chair on days I just know I do not have the power to do something and it’s never made me worse at all just because you have it does not mean you have to sit in it all the time your out you can get out and push it for a short period of time then you can sit back in it if you wish

Do what’s best for you not what the internet says we know know most about Fnd on there is a load of old tripe

If using a wheel chair gives you quality time with loved ones then go for it this time is so special

Tabe

[LilyMarshell]

Ignore every opinion piece you've seen online and listen to yourself ❤️

The fact you're considering a wheelchair means you likely need a wheelchair. People who don't need one, typically don't consider getting one.

The idea of a wheelchair making mobility worse is absolute hogwash. Your mobility is an issue, a wheelchair is a mobility aid that will allow you to be out. That's the end of it.

The stigma around FND will continue trying to limit us from accessing equipment and resources we desperately need. Don't let it stop you.

I've had FND my entire life, though only officially diagnosed in 2023. That said, I've been in a wheelchair since 2021 now.

I got my chair, not because of recommendations or because medical professionals thought it necessary, but because I physically couldn't get to work without it as my mobility was declining. So my partner bought me a second hand, powerchair.

Eventually, medical professionals kind of realised I'd needed a chair for at least five years and they prescribed me a manual. (Since the NHS only gives out electrics if you're not ambulatory).

I now have three wheelchairs - two powerchairs, which I purchased myself, and my manual provided by the NHS. They all have their place in my life.

I recommend trying to get a second-hand electric/powerchair - it'll stop you from overexertion via pushing yourself but will keep you independent (so your partner doesn't have to push you).

Remember - mobility aids don't make our mobility worse, they make mobility accessible. ❤️

I hope you have a lovely day!

[Lady4]

Just because you use it every now and again to improve your quality of life doesn't mean its permanent. I have used one in the past with my son, still have it. He was reluctant to use it last set of symptoms but if need be, it will be my go to.

[Van604]

I was in a well-regarded physical rehab hospital for a month, after being in a regular hospital for a month. They mostly dealt with spinal cord injuries and strokes, but accepted me for FND. Their attitude was, if you need a wheelchair, use it. After 3 weeks, I moved on to a walker, which I still use to go out and about. My regular physio told me to use it if it meant I can be more active. This is the sensible, pragmatic approach and there's no reason why it shouldn't apply to us with FND too. The reason some of them say we shouldn't use mobility aids is because they still believe in the outdated, Freudian concept of "secondary gain", which is a load of nonsense.

[Woollover]

Thankyou to all for your advice and support. We got a wheelchair on monday and have today gone into town on bus and wandered round the christmas market … a real treat☺️