Ataxia UK
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Help!

I am in a bit of a mess at the moment as I had a fall and broke my right ankle in three places, I was stuck in hospital for six days and kept having to explain to everyone that would even listen that I had Ataxia, you might think it should be easy as it was the hospital that I got my diagnosis in! No Chance, treated me almost like I was mad. My left side has been my weakest so of course I broke my right ankle, I know the NHS is going through the mill, but I have come out sicker and worse than when I went in. I am feeling pretty low and know I have to sort out a hire for a wheel chair as I cant put any weight on my right ankle for at least six weeks, my left is not strong enough to hold me up. I have two plates and four screws in my right ankle and a long way to go. Does anyone have a good contact for me to hire an electric wheel chair that will not break the bank. I am trying very hard to keep myself together at the moment.

Denise

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Dear Denise LB

Sorry you have broken your ankle. Try to feel better by resting... i don't live in the UK but maybe you can get one of those free donated chairs. Things will get better hopefully soon.xx N

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Thanks Neta

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try your Gp they might be able to advise you if any local services offer them for free I got manual one through referral but not sure about electric ones or red cross hope you feel better soon I know from going to hospital earlier in year that when I said I was in wheelchair for ataxia they didn't know what ataxia was but luckily I just had an infection and was allowed home with medication Linda

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I will contact my gp first thing on Monday, its just a bit of downer when I have picked up a chest infection to go along with everything else. It is also a worry as I even told them in the hospital that I was allergic to morphine so they gave me codine! The whole thing was a total nightmare.

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In New Zealand we have an A4 sized brochure called Health Passport which anybody can fill in and explain their disabilities. Many patients are too ill to speak clearly and this is helpful for medical staff. Perhaps Ataxia UK could provide something like this or like our Muscular Dystrophy ID card which prevents the police thinking we are drunk.

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Thank you for replying and it sound like you have a better set up than we do.

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I have a card of ataxia Uk but unfortunately some medical people are still ignorant about ataxia

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Oh my goodness, how awful you have been treated so badly. I too have broken each ankle twice ( all seperate occasion)the last time, my right . Like you in three places, op required , pins & plates. I was in hospital for 8 days and transferred to a carehome got 4 weeks as I couldn't weight bear. ( only 49, but it was here or with children)But unlike you I was treated amazingly

Phone your gp ( I didn't need too) social services. In the meantime The Red Cross or if you have a shopmobility store they hire wheelchair ( manual & electric) scooters etc.

You should however,not been allowed out of hospital without all the equipment you need.

Good luck x

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Numbers at the ready for first thing tomorrow, but don't you think it is crazy that the hospital that I was diagnosed in did not seem to understand my condition, they even gave me codine when I said I was allergic to morphine! I didn't realise they were related until I was actually sick. I was put on a day care ward, so had no idea who was being admitted around me, thank god a friend had leant me a wheel chair to go in with as I would have been stuck in a bed for the whole time. I've come out with a chest infection and had been so proud about how healthy I was prior to this. At least I really know now how weak my left side is. I will pick myself up again, but I would not wish this on anyone, oh and I had my 54th birthday in hospital!!

thank you

Denise xxxxxxxxxxx

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Hi Denise

Really sorry to read about all your problems. Isn't it frustrating that even the hospitals haven't heard of Cerebella Ataxia What can we all do about this?

Have you tried looking on eBay for your electric chair? There are quite a few starting at £10 pounds (might be a bit too cheap but who knows!) unfortunately most of them have to be collected but there must be some way round this Anyhow may I wish you all the best and try and keep your chin up. Let us know how you get on

Ted

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Hi Ted, thank you for that and I will look, but first number is my GP then Adult social care and as I couldn't find a bridge to jump off of then who knows, only joking. I am just trying to pull myself back together and I will do it.

Denise xxx

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Hi Denise

Sorry to hear about your fall hope you get better soon

I have just checked eBay and they have new/reconditioned wheelchair for about 50..60£ to sell

Hope this helps

Take care

Arthur

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Hi Denise, sorry tonhear about uour spell in hospital and poor treatment. I did not think they would discharge you if you were unable to get about. Can you ask for an assessment from Occupational Health and certainly talk to your GP. Some charities may be able to loan or hire you a chair. Good luck and hope you feel bettrt soon.

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thank you, I am getting my head back together so I know what I have to do.

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Dear Denise so sorry to hear your news. Are you on your own? Then the hospital shouldn't have released you without a care plan in place. It's happening all the time at minute as services stretched the very least they should have done an OT assessment before discharge. I am so sorry glad you are getting yourself together now mentally. Sounds like you are doing amazingly but try and get your GP to sort out for you and definitely get onto social care you can call duty even at weekend and self refer yourself as safeguarding if you don't feel safe on your own all the best my heart goes out to you.L

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Several things come to mind.

I have just recently been in hospital for a broken hip and have SCA type 1 and food intolerances.

Once you can look after yourself they release you, to free up your bed for the next casualty. The longer you are in hospital, the iller you become. Hence alacrity to get you out.

If you live on your own, a care package should be offered, which lasts for 6 weeks for free. Ask at hospital. There are 2 elements to the care. Your house and you. Someone will come weekly to clean your house. Someone else daily to help getting up and going to bed or cooking and shopping. Tell them what you need.

OTs will supply Zimmer type frames, toilet seats, perching stools, commode, crutches and sock helper, etc for free. Just ask.

Being able to urinate anywhere is a life saver. Baclofen makes me pee often. Get reusable pee bottles, unless accessible toilet on same floor as you.

As yet no financial help. After 17 weeks of being in hospital, DWP get interested. So do not tell them. It is highly unlikely DWP will find out unless you tell them. Once DWP stop support, everyone else is notified. So keep on top of DWP black balling you.

If you have a partner who lives with you, do not say the partner will look after you, because that will forego the care package.

After 6 weeks, care is chargeable despite apocryphal stories from carers.

Get everything in writing. Cleaning your house £12 hour, carer for you £15 per hour.

Red Cross loan manual wheel chairs. My local mobility shop hire electric wheelchairs. Where are you? Google search should find electric chair hire.

redcross.org.uk/en/What-we-...

OTs will take some stuff back. The rest give to AgeUK (warehouse not shop). Also a good place to get items. Buying online privately via ebay, Amazon, Facebook and Freecycle (Freegle) may be quick but frustrating.

GP may not be any help, unless they have a similar experience or patient. OT and social worker might be better. But the best advocate is you, fight your own corner.

Bear in mind, it could be worse, could have plaster cast to waist and immobile.

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That gives me a lot to think about and some of it I know I can act on, just spent the day with a friend to have a way to access all areas of my house even if it is quite slowly, I was pretty down when I sent the post although I am still trying to work out a wheel chair,

Thank you.

Denise xxx

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Hi Denise 🙂 I just logged on, what are you like 😉 I recall once reading a post from somebody else with ataxia, they'd been sent home from hospital, with crutches 😬

People have given helpful advice, I hope you get something sorted soon🙂

When I had chemo, I was an in patient over Christmas, they allowed me home for a few hours on Christmas Day, but it does tend to put a damper on the occasion 😏

Belated HAPPY BIRTHDAY 💐 😘 xB

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Thank you B, but it was not my best ever! I did get a bit sick, not only with the food, which is worse than I thought food could ever be, but with having to explain my condition. Even up to the time I was leaving when physio came to see me and I explained it was not possible for me to use crutches as my left side is not strong enough or stable enough to hold me up! It was a bit like talking to a child and should I mention them giving me drugs that I told them I was allergic to!

I have six weeks before they can put a cast on my right ankle strong enough to put any weight on it and up to six months in plaster, on the up side, John has been around the house and using useful bits of furniture and such like I can go from bedroom/bathroom down to kitchen and living room so I don't feel totally trapped.

Might not make any cakes for a while though.

Denise xxx

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Denise, this is all too familiar! Broke my hip and shoulder two years ago. Got bullied by nurses, treated as though I was deliberately being difficult, and then again last Feb/March was in for two weeks, unrelated though serious prob, different hospital but part of the same Trust, and was treated as though I was either geriatric or lazy. Forced to do things which put my physical safety at risk. And so and on. By the time I came home I was in a shocking state. Like PTSD. I’m not kidding. Took me at least two months to get my sanity back.

What to do? There is a thing called a patients passport, get it online, but really I think it’s the deficiency in nurses training. Apart from anything else, when I asked for help with sitting up (I was very weak with an infection) they told me that Health and Safety rules forbade them to lift people! Do they not understand the word Help?

And there is more. But run out of steam for now.

I think it’s about time we had some input into nurses training.

Anybody else agree?

Best of luck with the nightmare of the NHS.

Audrey

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Thank you Audrey you have given me some helpful tips, at the moment as difficult as it is I am glad to be home, this new thing that the hospital has about just sticking all patients together regardless what is wrong with them is quite strange and luckily I managed to get with everyone around me. I borrowed a wheel chair before I went in so did not end up feeling totally like a prisoner, but if not they would have left me stuck in that bed for a week!

I had a nap this afternoon and for about 30 seconds when I woke up I thought I was back there so am in a very good mood as I am not.

Denise xxx

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Denise my lovely, contact your local British Red Cross, they loan wheelchairs out!

Don. 👍😀

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