When I leave home and meet new people, I feel that many seem to be curious about why I am using a cane or a walker. I often would like to try to explain to them a little bit about my Ataxia. I wonder, though, if they would understand, or believe, whatever I might tell them. I would like to know what other persons with Ataxia usually do when meeting people who seem to be curious about their physical situation. Also, for most persons with Ataxia, does the attention which some other persons pay to their walking problems, very often discourage them from leaving home?
When should I explain my Ataxia, or feel self-co... - Ataxia UK
When should I explain my Ataxia, or feel self-conscious about it?
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jneilw51
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37 Replies
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I have had Cerebellar Ataxia for over twenty years and have not encountered one person, when I tell them that I have Ataxia, who has heard of this. I too would be interested to know what people do or say about Ataxia when they first meet them.
I know this is the wrong answer but I lie and say I broke my leg or toe and am recovering.
No one I have ever met anywhere has heard of (or believes in) ataxia. Here and there I have been asked, "oh did you have a stoke?" or "do you have MS?" I always say no. The funny thing (not funny) is that I once fell in Oxford, UK, in the Westgate mall. The security men (very freaked out) said "can we call your husband?" The joke is that my husband thinks that ataxia is just bullshit and can be dealt with by exercising alot, and I am just lazy.
My friends dad was like that. He kept telling her to pull herself together. He told her only recently ( after 7 years he finally decided to get on the Internet and read something about ataxia) he thought she'd got a drink problem. personally I think it was a form of denial as it was just too painful for him to accept especially as there was no treatment or cure. The only way to deal with it was to try and pretend it wasn't happening. Wish there was something more positive I could put forward, something of a practical help in dealing with this but we haven't found any yet. Think it will only be when more people learn about ataxia that things will get easier.
so sorry to hear that! i've only learned what's wrong with me in the past year after nearly a decade of illness and arrogant ignorant doctors, but having my family around me being supportive, telling me to rest, and asking me how they could help really got me through. for someone to see you every day, watch you struggle and keep going anyway, and dismiss your illness baffles me. i did have one relative who insisted on yelling at me every time he saw me fall. "why did you fall? what were you doing?" as if it were my fault. yes, it's denial, but that's his problem and doesn't help me. i often wondered how he'd do for two hours in my (wobbly) shoes. *sigh
Thanx for your reply . Its now 3 years later and some things have changed. Firstly, I was about to tell my husband that I could no longer go with him to the theatre, ballet, etc., when he poof died at a young age..went to sleep with a tummy ache and never woke up. Shock. Big time...These days I have graduated from a stick to rolllator and even that sometimes doesnt give me total support. A Filipina woman lives with me in part because my husband has died.. My kids are supportive but they, like many others, assume I will improve My PT says I should just keep exercising and ignore everything else, Doctors telling me awful things, the PT says are ""Just not helpful." In the meantime I hide in my home. The Filipino woman will only out with me in a wheelchair because she says thats safest. xoxoN
sorry, i just now realised this is an old post. i was looking through them and happened to come across your post. i'm sorry for your sudden loss.
i use a rollator rarely, and mostly use a power wheelchair. i don't go out much, but when i do, it's generally not safe for me to try to walk. i have yet to fall on the pavement (*crosses fingers).
i think one of the most frustrating things for me has been my first neuro saying 'you have ataxia,' and then never mentioning it again. i know it's really rare, but i looked at him and thought you're the specialist, what do i do? tell me something i can do? my mum believes god will magically heal me and i'll get better. she says i need to have hope. honestly, i do, because someday this will be over and i'll be free of my broken body. in the meantime, i leave her to her delusions, and try to appreciate the help she does give me.
with the fatigue and general difficulty of doing basic things--this week, i've been struggling with cleaning my teeth--i get the hiding in the house, but it's good you do your physio. small comfort, but it's something. thanks for writing back.
Sam999a,
And thanx to you 4 getting back to me.... I hope your Mom is right. I have encountered this wishful thinking before. I pray she is right.
I am annoyed that none of my neurologists told the truth about what could happen with ataxia. . Like one can develop vision problems; trouble sitting down; getting out of bed .... I use an electric toothbrush and lean on the bathroom counter, placing my head just over the sink--makes things easier. I fell once in Oxford , once in New York and once somewhere in Rome and twice in Jerusalem I was fine. But my fall in my LR, broke my nose. Go know. Ignore the italics..xoxoN
My friend has Atxia, diagnosed 8 years ago. She has found just 1 or 2 who have heard of Ataxia. Explaining isn't easy due to her speech problems due to ataxia itself plus people seem to get the bit about balance but never the bit about co ordination, not the easiest word to say or explain. She sometimes just gives up and says it's a bit like MS and that just seems to be accepted. She has tried using a written card to help but found this of very limited value- she has processing problems so the general assumption seems to be she has learning difficulties, is deaf or both eg at bank, after reading the card the cashier almost shouted EVERY- WORD - OUT - like she was some sort of village idiot. It was humiliating all she wanted was a bit of clarity and a bit of patience. Re going out in brief, very much so. It would seem that many people have a stereotype of what you're supposed to look like if you have to use a stick/ walker/ chair ( let alone mobility scooter!) ie this is ok if you're elderly or have obvious physical problems . As she does not fit this stereotype the staring and sometimes muttering from complete strangers is awful. It's as if because they can't see anything that appears to be wrong with you they shouldn't have to make any extra effort like walking round you instead of showing their irritation and all but knocking you over as has happened several times. It doesn't help with self confidence that has already taken a battering when this happens but she refuses to let others' ignorance let her world shrink any more and is gradually starting to try and venture out more.
Im not quite in your friend's league but I agree with every word you said, even chuckled. No one expects or even imagines a youngish person to be ill with anything. I am dying 2 b old!
Well said TedTom. I only saw your reply after I had written mine out - but I see EXACTLY what you are saying.
Iain
Hi TedTom, I have had Spinocerebellar Ataxia for 20 yrs+, my husband & I totally agree with all your comments andthink there should be a badge saying something like 'I am nNOT drunk, I have Ataxia, a neurological disorder' or something like it.
Your friend is not alone, tell her/him take care
Berejena
When asked by strangers I say, “it’s something neurological”. That seems to be enough. Others are told about ataxia and explained what it is. They all seem to be interested and want to know about it. Some have even looked it up in books or on the internet to find out more. Even m GP.
HarryBAdministrator
Hi jneilw51
I have been diagnosed with ataxia for nearly 25 years. When I was first diagnosed I was embarrassed about it. i am sure it didn't help that I was a teenager back then and very image-conscious. I eventually started using a stick to alert others that I did have a medical problem and I now explain to people what ataxia is, usually along the lines of 'I have a problem with the part of my nervous system that controls balance and co-ordination. Because of this I can look like I am drunk but this is due to a neurological disorder, not alcohol' If they don't believe me that is their problem. In my experience that is very rare.
I often think 'What would I think if I saw me walking down the street?' I would probably think 'she has had one too many'.
I probably wouldn't have heard of ataxia if I hadn't been diagnosed with it. By explaining to people what ataxia is and why I move like I move, I am both educating people and spreading awareness of the disorder. I would much rather tell people as soon as I can rather than let people's imagination run away with them as to what is wrong with me.
Harriet
"That is their problem".
Exactly Harriet. Sufferers have enough to worry about, than waste a single minute on people who just don't want to understand.
Iain
I so wish that I could give you a positive answer. One that would help you immediately. But I recognise so much in what you have written.
I currently use a stick to help me get around in public. I don't need it all of the time though. Once I'm walking, and as long as I concentrate 100% on walking, then I have few problems. And so I actually carry the stick most of the time. I only actually need it when I stop/start - and stepping up/down (particularly down). I need something to hold on to. This causes a change in psychology too though. Completely self-inflicted of course.
Some people look at me, look at my walking stick, and ask questions. Which I'm always happy to answer (even for the umpteenth time that day). I have found that strangers are more accepting of the answers. People who knew me pre-ataxia find it harder to accept my disability (and some actually question whether ataxia exists at all - as they've never heard of it before - and they "know everything"). What makes matters worse, is that I have an unexplained ataxia (I was actually quite relieved when one test showed positive though - as perverse as it sounds - as at least I could now show that it was real).
The biggest problem though, is strangers who don't believe that ataxia is real. Some people look at me, look at the stick I'm carrying, and tut/shake their heads/snigger.
If this was just an isolated case, then it wouldn't be much of a problem. I could just laugh it off as "one of those things" and happily continue on my way. But it's not an isolated case. It happens a lot. So often, that I've actually considered using the stick to walk too - even when I don't actually need it - because it would make my life easier. It would make my disability "real" for some people. But I won't. Losing your abilities is hard enough as it is - without accelerating the problem just to make it "easier to accept" for others. Uneducated people I can fully accept (hell, I never knew about ataxia before I was diagnosed), but there are some particularly nasty people around. And there always will be.
This would be the "cop out" option for me though. Make my life worse, so that some sad people could have an easier life.
A bit like your "stay at home" option. Just accept that some people will always question your ataxia. And enjoy YOUR life as best as you can!
The ultimate way to solve your situation is the same, and only, solution that has solved similar problems faced by any minority. Education. The education of the entire population. The general population needs to be made aware of ataxia, how it affects people (not just physically, but the psychological impact of the sufferer realising that he/she can no longer do the physical tasks that are taken for granted, and the realisation that some non-sufferers, through their ignorance of ataxia, will question the existence of any disability at all).
But their education is a longterm solution. It will take a very long time to happen. But it's a struggle that has to be endured.
Much easier with a smile on your face, and a song in your heart. Enjoy life, and the amazing people that you will encounter - through having ataxia. There are always positives. Seek out, and cherish, the things that make YOU happy.
I agree with everything you say, Iain. I have encountered real kindness from a whole range of people: yesterday, a teenager saw my hesitance when using a crossing during low sunlight and gave me her arm without question. Like you, I can manage most of the time without a stick but am grateful for the security which it provides and the message it communicates to others. Only once have I been accused of being 'drunk' and that was by a guy whose own intoxication was evident!
Yes. It certainly brings out the best in people too. Much more than I ever expected.
While I was waiting for the eventual diagnosis earlier this year, I did a bit of train travelling. I stumbled and fell in Palermo, Sicily. It was nothing serious, and only happened because I was walking on marble-like paving stones on a very sunny day (I just didn't see the step down - it was only a drop of a few inches, but it was unexpected). As I was sitting there licking my mental wounds, an old guy (maybe 80) came over and helped me to my feet and made sure that I was OK. It did feel all wrong though (it should have been the young-ish and fit guy helping the elderly guy).
His kindness reminded me that most people are only too happy to help a stranger 
Hi
Having a cane when you go out will signify to most people that you have a 'difficulty ' of some sort. If they probe I find the quick answer is to say I have a 'wobbly wobbly' gene, which causes me some unsteadiness.
I used to volunteer information on my condition only to discover other people actually hadn't noticed!
So now I tend to behave as though there is nothing wrong unless someone comments.
The more exercise I do and the more work I do on my speech the less noticeable is the problem.
I find the other folk on here are a great support and have set up a web site at Ataxiafightback.wordpress.com with lots of exercises for all parts of the body.
I'm sure others will share their experience of 'coming out' about ataxia.
Nigel
Hi I was diagnosed with fa when I was 22( had symptoms for years) & my eldest sibling has it too . I am now 49. I have always told strangers in my life exactly what I have, what it effects etc etc.. I use a rollator a wheelchair & a scooter. I am & never will be "put in a corner". My son is 11 & all his friends think I'm a cool mum, he nor myself have experienced negativity from them. I have accepted what I've got and although difficult at times I will not let ataxia dictate to me. Be yourself love yourself and NEVER make excuses for other peoples insecurities, negativities or ignorance ..Mary
I have had ataxia for about 10 years but only recently diagnosed and have joined Ataxia UK Like you I have been asked what is wrong with me. Ataxia UK sent me a very helpful folder/booklet including a small card saying----Iam not drunk, Imay fall over, my speech may be slurred, I may walk as if I am drunk, I am not on drugs--- I HAVE A MEDICAL CONDITION ATAXIA and overleaf it gives a short explanation. I have found this most helpful.
berejena• in reply to
Hicrisal I did'nt know the existence of a booklet incl. a small card explaining briefly about Ataxia, must apply for this.
Keep well
Berejena
The replies seem to cover most problems. I can only add my tuppence worth. Before I finished up with my work I sent an email out to my work mates to explain some of my symptoms and added an attachment with the official brief about Ataxia that was easy!
Unfortunately I am also suffering with speech problems so it is not easy to explain to anyone who asks about my condition. I also am inclined to say it is a Nuerological issue and it is a cousin of M.S & Parkinson`s (people at least have heard of both these disease`s, I am afraid I can`t contribute more to this issue as I am trying to come to terms with my own limitations.
trac67
All good replies, I was also asked if I had had a stroke, even been asked if I had got cerebral palsy by some one that didn't know me. I use a stick when out, all the time now when not using my shopping trolley ( and I hate it. )
It can be hard for people with Ataxia to understand the condition, and we have some knowledge about it.
I use the cards that are printed by Ataxia uk that give info in a lighthearted way . they are free and I dish them out whenever I go out. people find the cards informative and useful
I have spinocerebellar ataxia type 2 ive had it three years starting at a young age.
Most d efinately, I did have a major. Problem with going out of house,peeople thoughT I had a drink problemor drug related. I had to see a phsycologist to help me which helped. I rarely feel a problem now, I hang onto my husband..
But, it's not just been seen relying on a walking stick or rollator 😐
I was out shopping with my husband, and I left him to go into Boots.
All I wanted was one item, I knew where to find it and the shop was familiar😊
After I'd located what I wanted, an assistant pointed out a special offer giving
half as much again inc 2 free items. It was a saving but no matter how many
times I asked her to explain, my brain just couldn't compute 😡
I started to panic, apologized, paid for the original item and left quickly.
It was embarrassing but the assistant couldn't have been nicer😊
Generally, I don't think it makes much difference whether Ataxia is mentioned
or not. In the past I've explained and shown the card, but most people are too
busy to pay much attention. They'll nod, say 'ah' and that's about it and they
move on to the next person.
How many of us have stopped abruptly in the doorway of a shop simply because
either a sudden change of lighting or flooring has interfered with vision/balance or disoriented us? We know why it frequently happens, and we do it because we feel unsafe, we need to stabilise ourselves before moving again. It's just about the only
instinct I can rely on.
I'm currently doing an online course about Preventing Falls, and what causes them.
During the discussion, it was pointed out that someone hesitating in a shop doorway can cause others to fall.....😁
😊xBeryl
My symptoms are intermittent, and so I can be happily walking along and speaking normally and then it strikes and I can barely walk 50m, head nods, unsteady and speech slurs. People usually stare, but I just smile a lot and that usually does the trick. My friends are pretty used to it now, but the ones not are usually very kind.
Mxx
I have been unable to as yet go out alone I think I can manage but my coordination is so bad and balance that if I walk 10 steps I am ready to drop, I use a cane but my muscles become so weak I am just ready to drop. I totally understand about going into shops trying to think then process where it is then actually pick it up. It took me 40 minutes just to buy some snacks after taking an age to unzip my purse to get the money out due to tremors at the counter before my husband rescued me. I hate shopping at the best of times but really struggle now. I am starting to realise my Ataxia has something to do with my brain, as I woke today I sat up then walked happily to the bathroom, I felt normal for 15 seconds before my brain actually switch on and connected with my body, then BANG, legs went, head bobbing, fatigue, blurred vision. I had to sit on the loo for ten mins just to compose myself, this is my world at present and it's scary.
my favourite is when i''m out shopping and a child tells their parents to stop staring, lol. i used to hide at home when i first started using a walker. it was bad enough to deal with it without people old enough to be my parents staring at me as if i'd left the house without trousers on. i cried a lot, but my mum helped me. she fussed at me, but it got through. as others have said (and is now my new mantra), it's not my problem, it's their problem. i will say it surprises me how much people notice. over the last couple of years, i've used a motorized wheelchair. on the off days i can go back to the walker, people at the store will grin at me and say how happy they are to see me up and about! my vet gave me a hug when i went in with my walker.
perhaps because i go to the same places, people don't really ask me what's wrong with me. this could be because my disability is so visible. when i first started using a cane, people would jokingly say, "just break up with him, don't kick him," like i'd broken my leg in a domestic (no cast) and laugh uncomfortably.
i think the hardest is running into someone i knew before i became visibly disabled. with them, i tell them it's neurological and that makes them uncomfortable enough to nod as if they understood and quickly change the subject.
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