Ataxia UK

I am feeling really fed up!

For the last couple of months I am finally getting Physio and have found out that the muscle in my left leg has shrunk because of a fall in the latter part of last year I bent my left foot. My GP just told me it would get better, I have coped with a frozen sholder and all sorts of falls.

I am really angry about this and the reason I am telling you is do not put up with it. Over the last two years I have had to learn to write again and type and walk. My life line now is my stick and managed a mile yesterday with not help.

I am looking for work and as soon as I mention Ataxia I don't hear a word. I just want to hear from anyone that if fed up too, sorry, I try hard to push myself everyday and to everyone else it's just what they do!

It's just crap!

Again sorry I don't want to offend anyone it's just trying is hard.

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I'm with you I'm getting fed up to, my legs are getting worse and can hardly walk I have found out there's not much they can do. I am getting even more depressed than I was.

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I am going to try to say something positve but I may fail or misspell as I am good at that, I say we should get more support from the DWP to enable us to have some fun times, more support groups, actually any help at all would be. Since I posted I spent an hour talking to my sister and feel more positive.

I can't advise you and would not even try, but I have overcome things that I was told I couldn't do and I did, I will continue to do so, but you do it for yourself.

I had months of bleak moments as I could not find a way to cope, you just look inside yourself to remember who you are and then it comes back,

Please try this.

Denise xxx

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Mine seems to be when I get worst or something new, it takes me a while until I start to get use to it. Thanks

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I really do understand if it helps when this first hit me and I had no idea what it was I actually hardly got out of bed for three month. I thought my life was over, but it wasn't as I got up and stayed up. Nothing can ever help you unless you want it too but it starts with you.

just keep talking and it will help, in fact shout if you have too,

Denise

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Don't dispare get any friend you have to visit.Drop the ones that have no understanding!Even a phone call helps and don't hide away.I did even a small trip or chat to a friend helps via a phone.I get fed up with medication and GP apts.Try and take it 5 mins at a time,it is hard but depression can be overcome with treatment.I am still in the dark as to knowledge.I don't think I want to know!!But my 8 year old and parents do.My physio is great rather than telling me to try harder We buy chocolate!!She tells me the positive rather than the negative!People have 0 understanding in shops they get cross or knock you flying on crutches but the staff are great I go ask for help.Carry the basket and tick of the list!They even carry to my Dads car!!Morrisions and esp Tesco great they are introducing slow lanes there!Go streight to customer service.Explain the situation!!I am on first name terms(or they know mine I don't remember there's!)I thanked the manager of Tesco for his staff he thought I was going to complain...It makes a difference to them and Morrisons employ many disabled people!!Deaf etc or mental health so both stores 10*

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Here here look how much you have coped with if poss see anything as an achievment.Picking my son up and him saying "I see my Mum!" On crutches is far better than being in a hospital bed for over a year + I felt worse for him (he was well cared for and loved)But as his Mum I couldn't even look at a photo of the past us smiling together it made me feel so guilty?Why?Because I am his Mum and he needs me as much as I need him when I came home I was remote woman he was terrified (of hospitals of me going,and I think very cross with have all our pictures up now it maybe tandom parenting my Mum and Dad but they always have loved him so much(my Mum saw him born)She had never seen a baby born before!!She was out of it (C section for me and my brothers)My Dad held him first (He calls my Dad sometimes Dad but not my Mum!!He has never met his own Dad (So he is very special to us all including both his uncles and there wives )My Brother had no children and she had said never within months she announced a new arraival we stupidly thought another Cat!!!It was not a cat it was one more cousin with another two to follow!!So yes he has Mede his place well known in the family!!❤️❤️And given me hope when I felt no hope!!

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Is there a support group in your area? Or maybe Ataxia uk could put u in contact with someone in your area.

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no not that I know of, I wish there was it would be nice to talk to somebody in my area

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Denise LB. Thank you for posting and venting. We communicate in this forum, in support of each other. I have often felt the same way. That's fine! It's a rough road to travel when one has had innumerable falls, injuries etc., and then the Dr. seems to be nonchalant, not really too supportive. That's how it's been with me at times too. Congratulations on going a mile! That's great! I can't walk much, because I'm going to have two knee replacements. I have severe arthritis, a frozen shoulder-torn rotator cup. I've had two concussions from falls, and to top it off, not only have I been diagnosed with Ataxia, but, just recently, Parkinson's. I'm so sorry to hear that you are having trouble finding work, and that you are being discriminated against because of Ataxia. Just know that there are others of us, out here, with Ataxia, going through difficulties, too, and that we understand, even if others don't! Wishing you the best! Keep on keepin' on, and take care!

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Hi

We can all empathise & know how difficult things are/can be. Falling is painful at times - I'm sorry you're suffering.

Ataxia can cause depression. It's no wonder! As im unable to take the antidepressants the GP prescribed due to pain they cause, I'm trying to eat healthily, exercise and remain positive which is difficult at times! I realise the specialists can help to a degree but I'm of the opinion we need to help ourselves too, which is what you're doing.

Perhaps a support group of like minded people may help? try Ataxia uk.

Ataxia is crap but we have to cope. We've no choice!

I know how difficult the job front is. People are uneducated as most haven't even heard of ataxia. Sufferers differ greatly too. Do you have critical illness cover? Again speak with ataxia uk as they might be able to help.

All the best & good luck. keep your chin up & stay positive 🤗

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My thing when I'm having alot of trouble I can't go to ER because nobody knows anything about it and there's nothing they can do so I feel helpless.

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Oh dear I really did open a can of worms saying I was fed up. There is nothing in my area either. I did not have any intention of bringing anyone else down. I too am on my own, but I do have a good friend that helps me out and I am learning to ask for help. When I say there is nothing in my area there is nothing that I would not have to rely on someone else to get to. On good days I always push myself. So what are the people like that live next door to you? I am learning, don't be scared to ask.

Please let me know how you are doing and don't worry what your local ER thinks as have been their a few times, most of them want to help as much as they can.

Denise.

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hi i have same problems gp hasnt a clue my feet get ice cold but can be warm to somebody else they are also numb but hurt like nails being pushed in so he says they. cant hurt if there numb i cant walk more than 1 step without falling my speech is going and swallowing is bad but he just talks through me to my partner like im not there

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I have been through the same thing my best friend John has been on every appointment with me, I have my first on my own on Wednesday! Not worried about going on my own its just we have had such a major cold snap here that my legs don't really want to do anything. So I am worried about walking there on my own, I don't know where you and am not going to ask, but I found through my local council, not my GP! Greenwhich Neuro Rehabilitation Team, through them I have had 3 months of Physio, but they help with speech and many other things and they came to my home. I never rated the council here, but I now rate my GP even less as this was avalible to me over a year ago. I suffered with speach in the early days so I started to talk to myself outloud just the things that were in my head. It got better for me or at least I think so!

As far as the falling over you just have to think of just one thing at a time and block everything else out, easier said than done. That advice that I have seen on this site all the time, you might have to get selfish as you have to work out what is right for you.

And I am still learning.....

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Please consult your GP in the first instance about your depression. It is treatable

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