Ataxia UK

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Anyone need Information and Support!

I just did the Ataxia survey and it seems that is where I am at, 78% of us in the same boat it seems. I have finally given up on the idea that I am going back to work, not because I feel I can't do a job it is just actually getting there. I explored every avenue only to hit a brick wall every time. There is a gov scheme in place that is meant to pay for travel expenses for a whole year, but the catch is you actually have to be working to get on the scheme, sadly I was on a break when everything hit me. There is also job centre plus that is meant to help, in my case It was totally useless, I didn't have to attend they told me and wished I hadn't as I only lost the money that I had to pay out in cab fares to get there and back. I think the gov are putting money into these schemes, I just don't think they realise that the people that it is meant for never see it! Not sure if anyone has been in this boat! I have now lived on benefit for a full three years and it has been very hard, no treats and all these cab fares to hospital have all come out of my own pocket. So as I reach my 55th Birthday this year I am going to retire, so no more having to feel like have to bow down before government anymore, but this is a question that I would ask anyone in my situation, when I drop my ESA claim am I still classified as disabled? I was told that you are disabled if the DWP recognise that you receive more than one benefit, I currently get ESA enhanced and PIP. I must admit whatever the answer I will still take my pension, but it would be good to know. Not to leave this on a total downer, it will enable me to try and get a life back and I really do have some plans for next year.

I am going to find out if I drown in a swimming pool, I don't think I will, I want to have a go a quad biking as I can no longer drive a car and I have never been on a horse before!

Anyway thank you if you read this.

Denise xx

44 Replies

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I can swim for short distances with assistance such as inflatable armbands or a rope to hold on too and I used to be a strong swimmer. It was like that from the beginning.

A quad bike is good if you have enough strength in your arms to propel yourself forward for some time

Getting on a horse might be difficult. I used to be a good and very experienced rider but even thought I can sit without falling sideways, I cannot get onto a horse anymore. And it seems that in South Wales there is only ‘riding for the disabled’ for children.

I have no doubt that I would not be able to get on a horse on my own, but I would still like to give it a try and I am pretty strong as my legs have a mind of their own I make sure my arms are strong. I think its a bit crap that there is only riding available for children, it might be the same here, but I have found that you can chat people up and maybe you could get some help. I am a bit scared about swimming, but as Ataxia tends to change our lives my original bucket list had to go out of the window, so I am trying to create a new one that at least I can try, it is all hard as the mind stays the same and I don't know about you, but when I am sitting down sometimes talking to friends for a second I feel almost normal, but then I have to try and get up!

I would have another go at the horse riding.

Denise xx

I have managed to mount a horse thrice with the kind help of the horse farm owner and a wooden saddle high platform which had stairs. Pools terrify me. I am afraid to drown, BTW,how is your eyesight??? Mine is bad.. xx N

Dear Neta,

My eyesight is ok, feel like it is the least of my worries, but good to know that I am not mad for wanting to try horse riding, I am a bit scared of getting in a pool again, but I think I will be ok. I am actually one of the few that is scared of horses so it will be a tough one, I had a friend that owned two and once many years ago I just happened to be in the stable when one of them got spooked and I was stuck at the back. But we have to keep trying so I am just looking for anything that is still possible. Sorry your eyesight is bad, can anything be done to help? What about this fantastic laser stuff they can do now, would that help? I understand with this condition that being able to see is very important as it seems that if I can't see my feet they tend not to want to walk!

Denise xx

The JSA put you in one of two groups. NO HASSLE group and HASSLE group. The JSA can not cope with disabled claimants. Take early retirement until pension kicks in. They want to put everyone in NO HASSLE group. Is this why the unemployment figure will never be zero?

You should get reimbursed for medical travel, even par carking fees. Use HC2 or ESA letter to prove you are eligible. Apart from dentist. Even old claims can be postally applied for. During your hospital visit go to General Office to claim refund. But you knew that.

Have you had AGEUK visit to make sure your claiming everything possible? They missed SMI but it is no longer available. Now you are over 55 AGEUK will talk to you

I am actually not 55 until November, so far all I have managed to do is to have things ready so when I do reach that tender age! I can move quite quickly. I had no idea that I could reclaim any taxi fares, I have asked the question in the past and hit one of the many brick walls that I have had to face over the last three years. I will look into the forms as I have a few appointments looming, but I do know that they won't do anything about past appointments. I am actually happy that I won't be in the system anymore and am really glad that 31 years ago I took out a personal pension as without that I would have had to wait another 5 years. I am not a fan of the DWP and the way they handle themselves if it were an actual business they would have gone belly up a long time ago. I would go as far as to say that they employ some very stupid people. Anyway I will continue to count the days until November and try and stay positive.

Thank you for your feed back.

Denise xx

Hi.

I think you should be able to get free transport to hospital...

Ask your social worker, if you don't have one, you should. Apply for everything you can.

You may have to push all of it but, you are entitled.

Dave

Hi Dave,

Yeah I agree and after a broken ankle last year I even got on the list for a hospital transfer to the fracture clinic, my Ataxia is worse on my left and I just had to go and break my right ankle! So all set up I explained to them that I could not walk at all and was in a wheel chair and they said fine. All set so I thought, on the day I even called in the morning to find out if it was all going ahead and they said yes!

So knock on the door and one single guy and oh no he can't take me! I don't think I could have done anymore I ended up paying the price as taking stiches out after 7 weeks after surgery really hurts as I am sure you have guessed I missed that appointment. I am not even going to try and get a social worker now, but it is a thought that I have had before. I live in a very densely populated area in London and I think that has always been part of the problem. There are just too many of us and am a very small part of all that. I have got through it and cried a lot on the way, I think there are many things that I have not claimed for, but I am a one woman band and I think I will take my pension and then, maybe when I have at least got my pride back I might just kick some arse!

Denise xxx

Denise,

I feel so bad for you and all of us with this horrible problem. I am slowly getting worse, and cannot wait for tremors in my hands. Seems as though doctors from neurologists on down either don't know about ataxia, or don't want to.

it took my neurologist 2 years to finally accept defeat, and send me to Sheffield for a second opinion, (I was diagnosed within a short time). I have lost all faith in the system now, and have to rely on financial help from my g/f and a charity, as my very small pension is just paid every 6 months. Try as I have done (without telling lies) when it comes to applying for PIP (twice) and the assessment I had to do for the DWP (0 points) I just feel I should stop taking my paracetamol and muscle relaxants before I go to apply for PIP again, next year

a disgruntled, Peter

Hi Peter

With regard to the PIP application, have you asked to go to a tribunal??? That is the next step from a "mandatory reconsideration"

Get some advise from CAB or someone. Don't give up, that is what they want us to do.

Best wishes

Dave

Hi Dave, I have decide to reapply for Pip in Jan/Feb as the social worker and I decide this would be the best course of action. As far as the UC assessment is going, I have had the first mandatory consideration refused, but because of the way I felt I was being treated at the assessment, that was back in April. I am at the moment moving forward with the tribunal, I am just awaiting my social worker,to return from her holidays, this w/e, as we only have a fortnight left to launch the appeal

Peter

Hi Peter, I am still waiting for the decision on the mandatory reconsideration. The system is a complete joke. I'm on enhanced daily living and standard mobility but was given 0 points for the UC assessment. What total madness!

I got NIL points on my UC assessment as well, and like I think I said, the appeal was upheld. But I am taking it further, so have 2 weeks now for the specialist social worker and I to take it to a tribunal. I am ONLY doing this, as the woman who assessed me was a doctor, BUT as I felt I was being ignored, as no real eye to eye contact, as she was busy typing away. I felt it was so wrong, and even said at the time, and could feel a wave of anger and emotion in my tummy, how I did not stand up, shout at her, then walk out,,,,, I do not know. I am a very very respectful person, and having been working in retail since I was 14years old, having that contact, is very important to me. I just felt as if I was just another number on her job sheet that day. oh, I was on my own as well my social worker was unable to come with me that day

My first one was very much like that, it turned out to be one room in a Health Centre I had never been before, I was not offered the option of reclaiming my travel she barely looked at me, oh and her English wasn't very good. She had kept us waiting 20 minutes and then rushed through all the questions in about 15! Most of the questions were about what hobbies do I have, it was hard not to be sarcastic, at the time I could barely write my own name, I have slightly improved from that now. Although, painting and drawing were my thing and I don't think I will ever get back to that.

The second totally different it lasted about an hour, she seemed to have some understanding of the condition, but I can't deny that I was feeling pretty bad that day and it showed and I think that went in my favour. I had to go through a five month appeal with ESA, so I would have been willing to appeal if the outcome had not gone in my favour. But, let me know if this happens to you, they did not back date my claim! I got a letter to state that it will only be paid from that date the decision was made, in my case it took them 12 weeks!

If you do want some appeal letter formats, hopefully you won't need them, then just drop me a line. I have quite a few, some of which took me hours to write,

Denise xx

I just felt so let down, because the wording on the UC journal thingy acknowledged I do have a problem, BUT the over all picture... was zero points. Even my social worker just shook her head in absolute disgust. I was offered a claim for expenses on my first PIP assessement, but not the second, or my UC assessement. And will be very blunt about the next bit.... english was not the assessors first language, not that has anything to do with the way I was treated

Peter

Sorry I did not mean to infer that language was the main issue, but she was very stony faced and very cold. I came out feeling worthless and the whole thing was a waste of time oh and the money thing again. When the assessment came back the first time I got Nil for mobility and I did appeal and got no where, I wasn't really any worse when I applied the second time I just had a much more understanding person. I did put in a new claim though on the basis that I had got worse.

Any way let me know how you get on and be good do not tell them where to get off!

I know how hard that can be, It gives me even more reason to take my pension in November.

Denise xx

Oh Denise, I was not inferring the language she spoke, but her whole demeanour, face like a bulldog chewing a wasp springs to mind LMAO (that was a joke, for those "sensitive"souls out there).

I will gladly inform those people who may be interested, when I get the process underway this next week. Question tho, exactly what is a tribunal, in this set up, is it just re reading the assessors notes, do I physically attend (this is for the UC assessment NOT the PIP)

Peter

Oh sorry I am far too straight laces for that sort of comment!!!!!! And the last person that said Oh Denise I think was my mum!

Only joking, I am guessing that you are much younger than me, but I think they all follow a similar path, the complaints part ends up in the same place,

As far as the tribunal part you do have to attend a court, I turned down my first two options but was willing to send two people in my place. It is a total legal process and you have to follow all their rules accordingly. I live in SE18 and in the beginning all the offices that they sent me to attend were in Central London. With my appeal being based on me not being able to attend because of distance and that traveling very far from my home was my basis for appeal I had to turn them down. I had already been without benefit at this stage for five months and so I held out and ended up in a Court appointed office only three miles from my home. The DWP did not even turn up for the appeal and I won on every count. It would be a lie if I said that the lead up to this was very stressful and even when I did win it took a few months to get any back payment. There is so much more I can say on this, but it would take hours. In the work that I previously did I had to deal with a lot of Employment law cases and that was my approach to the appeal.

I have an A4 file full of my case and I am happy to share anything that you might find relevant.

And Oh Peter!

Denise xx

ha ha ha, I am 58, going on 78, according to my dad.

My sister is "shit hot" (excuse the french) on quite a few work related cases, and if she does not know, she knows someone who can help, as she worked for a big city council, I have a very good social worker, whose sole job it is, is to make sure people get what they are due. Just in my case the dates of my 2 original assessments, she was out of the country, but for this tribunal, I will make sure she is available, or take someone who knows about ataxia, and can get the point across better than I, as my speech at times can be a tad difficult

fightback4justice.co.uk/ I was given this by a friend, its of intrest for getting the right help, but I have not used them.... yet. Also, as a Freemason, I have access to a lady who works in their charity office in Leeds, and she deals with legal stuff every day

Peter

This doesn't happen very often that I am still in front on my computer when I get a response, oh so it seems you need no help at all, all in the bag it seems. Well given the fact that I did my whole appeal myself and won then I must be pretty good too!

You don't need to use the fightback thing you can do it yourself and from what you are telling me I doubt it will come to that. Lucky you to have access to a Lady!

The speech thing, I am not mad but when mine started to go and I do spend quite a lot of time on my own I started to talk to a wall, I did try god but I didn't get any feedback. But it was more to get my vocal cords working and most people don't notice anything wrong with the way I talk at all now. I have a John, he was my partner but got fed up with me being sick and decided we were no longer a couple, but he has stuck around and still helps out, but I live pretty much on my own.

I didn't think UC was even an option for me and is it the way you should go? But as you have more legal advice than I could even muster I am sure you are right. I very rarely say that to anyone by the way.

The one thing I will say, the whole of my court appeal process the one guy that was there to judge me was watching me the whole time. I had both John and my brother there and they did do a lot of the talking for me. But his eyes were only on me and my reactions.

I must find someone shit hot in my life too!

Denise xx

I have too much time on my hands now, so spend a fair bit of time looking at different ways I can fight for myself, as have found, no one is going to hand you anything. I do get frustrated with all the beocracy of dealing with the DWP, in the form of the job centre, the lady who I have been dealing with, says she understands, but does she really?

I only went for UC, as I had to have a hernia op last July, and had to pack in work, and as I was just a butcher, and had a great boss, was unable to go back, as the ataxia had got worse over the couple of months, or it may have been the pain of the inguinal hernia, that sort of masked some of it.

I could go on and on, and as my UC online journal attests to, and has been said by my job coach, I can write a bit.... this maybe true, but its my main form of communication now

Peter xx

Oh Peter!

That has stuck now!

Oh yeah so much time, I hardly sleep so my days go into nights and sometimes I am not even sure what the time is. I would never say "only a butcher" I think that is a pretty class act. I was only a Payroll Manger! so I got to earn pretty good money and I did the whole Finance side and followed the legal side of business too, but I am where I am. I think it must of been harder for you as you would need to stand and use your hands more. I could work if someone could just scoot me off to somewhere in London. I see jobs that come in everyday that I know I could do if they were just down the road.

Oh dear I appear to be moaning. I try not to do that and in my more positive days I try to at least go for a walk, have a conversation at least once, keep my house clean and I always loved cooking, so I try and cook meals from scratch. On a bad day I hardly get out of bed. But, I am the glass is half full and I know that the more I push myself the better life is. Oh and as you probably guessed in an earlier post I am the 54 year old wishing the days away and I will put a massive post on this when I hit 55!

Am happy to talk any time.

Denise xx

Denise, I know how you feel about getting tired and that, somedays I feel like I could just stay in bed, but I HAVE to get up and do something, my neurologist said to me back in January, "you must do something, even if you just walk a little" So many people just sort of give up, and thats the wrong signal to give out. As long as there are no hills involved (going down is worse than going up I find)

Cooking is not my strong subject, even though I come from a hotel background (1970's) thank god for ready meals, LOL

Oh Peter,

Sorry that will happen every time now, did you miss the part that I am a half cup full sort of person, I manage quite a lot, I do everything for myself and if I do say so myself I managed much better than anyone thought when I broke my ankle, I still managed to look after myself. They sent help and I had no idea what to do with them!

Not sure about the 1970's and the ready meal thing. Not sure the hotel background would mean you could cook, but I guess it would help you plan.

I am not even at my best at the moment, but I am a pretty positive person. So maybe you could go to cooking classes, I am going to have a go at horse riding so I think cooking would be a doddle!

I try and do something everyday that tests me.

Denise xx

horse riding??? I can do that, or could, my only problem would be getting on the beast, likewise a motor bike, I could not get my leg up. I know we may talk about certain things in jest, that most people do, as a matter of course. Its finding things we can do that matters. I may start and do clay pigeon shooting, as did that for many years when I held guns (legally, lol)

well I suppose I had better think about tea, think I am been taken out..... maccy dees probably

Peter

I had to apply for PIP twice as the first time I got nothing for mobility, I was confused by that as my main problem was mobility! Even then I have only got the basic rate so I am not entitled to things like a free buss pass or dial a ride as they require me to have the full rate for mobility. Even more confusing as the PIP told me that the only people now that receive the full mobility rate are those that can't walk at all.

I got a friend to fill out my PIP form for me and I was quite shocked at the time at what they actually put, I didn't think I was quite that bad, but then faced with the issues I had to admit I was. They also came with me to the appointment and I think that helped too, do not give up.

Denise xx

I’m on basic mobility being 6 points but needs 7 for free bus pass however my local council gave me one anyway... maybe if u write to them explaining ur issue and that u have to regularly attend appointments and u can’t work and it’s worse at times etc... but yes u should get the bus pass as I did and know others that have (my bio mum being one of them think she gets higher rate now anyway as she is really bad and her speech is so bad also)

Keep on fighting for it.... others have it so unsure how they can give PIP to some and not all even if u have to exaggerate it as the time u will b bad u wont b able to fill paperwork and go to appointments and hearings as b too bad so get it done now... also write to ur MP if still having issues... say it’s hard to judge as have good days and bad days... bad days out weigh the good but u cannot possibly say how one week goes from the next so always different on each case

I said to the panel 1 in 100,000 have this in the world... less than 2% in the UK have this specific one (sca type6) no one can tell me they r a expect in this field as not enough evidence and it gets progressively worse as time goes one so when u do get it u should get it forever as will never get better only worse x good luck

I have very much had the same problem here, I do feel like they don't care, it was like they checked all my vital organs and once they were happy (did not opt to tell me for some time though) that I wasn't going to die any time soon then I got stuck on a back burner. It took them over two years to even show me the MRI on my brain to find that there is damage to my cerebellum, that may have something to do with my symptoms!!! Any way as hard as it is we just have to get on with it!

Denise xx

Hi Denise

If you get PIP with a mobility payment you are disabled.

Claim everything you can and get help from your doctor, social worker etc.

No one is going to knock on your door and ask if you want these things.

The hospital should be able to arrange transport for you. Not sure what they charge ???

Keep smiling

It confuses people ...

Dave

Thank you Dave, I had not really thought about it like that, I do get daily living and mobility through PIP.

I don't really want to try the hospital transport again as they let me down so badly last time.

But, I do like the bit about smiling confusing people, I do manage to do quite a lot of that.

Denise xx

I used this site to get advice: benefitsandwork.co.uk/ and I successfully claimed PIP (got enhanced care & mobility) and ESA (was put in the Support Group). The ESA claim went through without my having to have a Work Capability Assessment which was probably due to my award of PIP. If you are in the Support Group for ESA you can stay there until you reach State Retirement age (67 or more) so don't close it just because you are leaving work and claiming your private pension early.

Good luck.

Thank you Sharon, the reason I will lose my ESA is that I am taking a lump sum from my pension in November mainly to clear the debts that I have amassed over the last four years, the fact that it is tax free will make it even sweeter. But, the pension that I will receive annually is still higher than the amount of payment I currently receive through ESA even with the disability factor.

I don't know how you got away with not having an ESA assessment, I got my PIP claim through while I was only receiving the basic ESA amount and had to go through the appeal process because I had not had my assessment for ESA, they stopped all payments to me. I have spoken to quite a few people on this site and it does seem to make a difference as to where you actually live in this country!

Just one example I still pay council tax, at a reduced rate, but if I lived in Wales where my mum lives I wouldn't have to pay anything.

I meant to be in a support Group too, I didn't exactly find it very helpful! Although it did get them off my back so to speak.

I never really thought I would say this but I am counting the days until I am 55.

You maybe able to help me with this, from everything I have read, is it true that I can still continue to claim PIP?

Denise xx

I’m in london (south west) and I am exempt from council tax x

I have lower rate mobility and medium/higher rate living.... so u think should be getting higher rate then if so maybe I should fight it (what sca type do u have plz)

Thanks

Hi, I personaly have SCA7. sorry to say this, but I DO SEE why people who are affected by this condition, have to lie a little, on whatever assessment they have to do. I have realised this for ages, but it was just "bought home", last night (see my post labelled, "advice". They have said for the work capability, that they recognise I have something wrong, BUT still, I got zero points. I am so so angry, and especially now, with my father been struck down with "something (awaiting the test results today) and will soon die. Am fired up for my court tribunal, and as am taking my partner, that has seen my decline in mobility over the last year, who has NO filter, is very fiery and says it like it is (she will prob get done for contempt, lol). I find it hard at times to convey verbally my symptoms, but have someone who can speak up for me. My trouble is, I am very stubborn, and if I have to crawl through broken glass to do something, I will, plus I am well educated, and know how to get from A to B. So am not daft

I would dare anyone to say you were daft and then stay well back! Luckily I am probably a couple of hundred miles away.

I think this is becoming a major issue as we are all dealing with different councils that all seem to have their own rules, I obviously spent some time checking my own and due to individual budgets some do more than others, but there should be some sort of platform that we can use as a guide line, I live in South East London and have to pay some council tax but then found from Magicwomanz (hope you don't mind me quoting you!) who lives in South West London doesn’t, I am going to spend some time looking into what we should be able to expect. I do understand from when my niece stayed with me that there is a minimum of £450.00 per month towards housing, but this is more in London. Again it seems it depends on the borough!

But, I can't deny I sent my change of circumstance by snail post to my council to find out if I have to go back to paying the full rate as my pension is now in play. I am sure it will take at least six months to sort out,

if you want any help with letter writing you can rant at me and I will find a way of putting it slightly more politely, or not!!

Denise xx

Just seen this where in se London u based I used to live there couple years back... I have to redo my esa soon even thou I was told was ok to 2021 my PIP until then so unsure why need to do esa again as have the same condition althou 2yrs later it has worsened and will only get worse have also explained there is no medication or cure so surely once you start getting it they cannot take it away from u....x

I will be honest with you I don't understand either. With ESA for me was a one off, it did take them 18 months to finally access me at home but I have never heard of any reassessment. PIP yes they do and my next one is August 2020. It is all a bit stupid though really as there is no cure for Ataxia. Check again about your ESA.

Oh Denise, oh Peter,

Sorry I couldn't resist that 😉😁.

My advice is tell them how you are on your worst days. You're not lying or exaggerating, but tell them only about those days. Also I think we forget what it is all like for normal people, and I think in your head that should be your comparison. For example on my bad days it's an enormous effort to just take 3 or 4 steps with my walking stick. So that's what I told them.

This was the advice that I followed here in France from an association that helps me with all my paperwork and any other problems (association paraplegic de France). I know the system doesn't work in the same way but still the same advice works. Worst day scenerio.

Good luck

Love

Alison xx

Oh Alison!

Do you think we have started something here! I agree with you and as I mentioned before it really did go in my favour that I was pretty unwell on the day of my assessment, my crying probably didn't do much harm either. Not that I am telling anyone out there to start crying, but...….

Denise xx

Many thanks to u both for advice .... I have been given 2wks only to fill in form but just got it a week in and also cantget appointment with citizen advice for 3wks time ... I need help filling out thou will they put on hold do u think... surely if they have given it to us few years ago and it’s a condition that gets progressively worse and no medication or anything to ease or help with it and have shown signs years ago how can they say oh u need to be assessed again surely have a life long illness with no cure means just that grrrrr sooooo annoying...knees r getting bad nowand have many more sleepless nights than did when first awarded disability ... I think this time I’m going to tell them every day like my worst day now so can get higher rate as fed up of them making us do stuff when feel so rough... clearly our dna doesn’t lie not like we make this stuff up... when I first applied and had to appeal a officer for my housing advised me to exaggerate also as only way they Will Accept ur claim is if at least 5/6 days out of 7 ur really bad.... and that was from an advisor who helps people with disability claims and benefits so go figure lol x

Hello,

If you need more time you need to tell them now and just make it clear that you can't fill the forms out yourself, I seem to remember there were other options open to me at the time. Do you not have a good friend, family member or neighbour that can help? Could not the advisor help you as she/he seems to have some understanding? At the time I applied I was struggling to write my own name and I was still in total denial. I didn't even know what I was doing. I spoke to their help line for quite some time going through everything verbally and originally I had only been signed off as being depressed. When I did get my claim through they backdated it to the date of my phone call. It is worth a try,

It does seem ridiculous enough to get this condition and worse still when you are told to basically get on with it, you are not going to get better but you may have to spend the rest of your life explaining it to other people as we are really not doing much to help you. Sorry I am not trying to upset you, but these are facts that you put into your claim. You are right, how can anyone really argue with you. That is my stance now and am happy if anyone wants to run test of me to find a cure!

Let me know how things go.

Denise xx

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