I decided to take a walk to my local Tesco store this evening, as much for the exercise as anything else. As I have only very recently developed the symptoms of ataxia, after suffering encephalitis caused by a VitB deficiency on xmas eve, I decided to walk without my stick to gauge my progress in the walking stakes.
Needless to say I found myself tottering around a little bit more than I had expected to, especially in some of the more dimly lit parts.
What I hadn't expected was the reaction from other people in the street. They mostly gave me a very wide berth and obviously considered I was drunk and potentially unpredictable.
I'm sure that most people reading this have encountered similar reactions. For me, however, being very new to this condition, I felt just a little shocked. Do I really have to carry a walking stick as a "badge" as much as a walking aid? :o(
Yes, indeed. I will use my cane if I am having an question about my balance or weakness. It's true that part of why I do it is to avoid the "looks". Get a cane you fancy and keep it close.
People also assume if you have speech problems (and many with ataxia do), that means you're not too bright.
Hi Julian, the reaction you got from people isn’t good and it’s frustrating because you feel you almost need a label. My daughter is almost 17 and is often looked at by others as if she’s drunk. She wears splints on her legs and uses a stick which isn’t to lean on but more to give her brain feedback of where the ground is as she was starting to lean forwards and risking her spine curving more. It’s sad when you need to use a stick as a message to others but it does help people to know that you have a problem. I use a stick for my disability now and find that people are more respectful than when I try to go without it. I wish you good luck for the future!
April
Hello Julian, Yes, get a cane ..... needless to say when I use one, despite stares, I get some compensation by asking them "who the hell are they looking at anyway"?
My thoughts were less about what others were thinking, and more about you not falling. Please be careful a broken bone on top of all the new health issues would be very hard.
Why are people, so concerned as to what others think, they do not pay our rent, and I guess to many out there, pre judge others, " Those that mind, don`t matter, and those that matter, don`t mind ", if we can remember, sayings like that, they can help us cope, with the uninformed. Have a great day-we are all in this together, please don`t isolate, share what`s going on, I know at times I don`t, and it`s a very lonely place.
Patsy said:
Yes, definitely get a pole/stick/cane.. that was the first useful information I had from forum.
I always smile too that seems to either bring out the best or worst in people but helps me to see the funny side.
I know this seems to go against the trend that people post - but - I've found over the 6 years I've had Ataxia - that in department stores, supermarkets, theatres, walking in towns etc. all I seem to get is people asking if I'm OK, or can they help me. Some ask what is wrong, so I tell them. Perhaps I'm just lucky, and am yet to meet with the funny looks etc.
I do sometimes use a walking stick/cane - if it's wet, shiney surfaces, going down slopes, as with you - in the dark I can be all over the place.
Hi Julian!
Think back to before all this happened and you walked in a normal fashion and didn’t slur. You didn’t know
anything about Ataxia, you’d probably never even heard the word. At that time, if you encountered somebody unsteady on their feet, you’re immediate reaction would be to assume they were drunk and give
them a wide berth. It’s human nature.
It took a long time before I felt at ease carrying a walking stick, perhaps I wouldn’t have had bad falls if I’d
just used one as a precaution.
The average person isn’t always courteous to somebody with a disability, sometimes a visual aid like a walking stick prompts them to think twice. Keep safe. xB
Before I was diagnosed I got arrested for suspicion of DUI. The physical tests obviously didn't go well but I passed the breath tests. So even though I wasn't drinking the cops took me to a hospital for a drug test. I figure Ive been accused of being drunk quite a few times and it has made me very paranoid about police. Sadly since I now use a scooter for getting around I no longer get accused but yeah it did bother me back then. I hate to say it but cops have no clue what ataxia is so every time someone asks you need to go through a big explanation. My cousin has it too and he also gets stopped a lot, but then again he is a big drinker so he brings that upon himself!. The on.y solution I found was to carry a Dr note that gives some proof there's a medical reason for looking drunk.
I'm having to retype this as I accidentally erased the original. Oh, well!
I could tell you many stories about the negativity I have experienced in the past five or so years since my ataxia 'kicked in'. I could tell you how many times I have been accused of being drunk (even in the last two years where I have not drank alcohol at all). I might relate the times I have been accused of 'faking it' or being a benefits cheat by people that I have never previously known or met. The amount of times ignorant strangers have told me I do not need my walking sticks or elbow crutches in a rude way is unreal! I have even had strangers deliberately block my path when I use my mobility scooter just out of (seemingly) pure nastiness - one recently told me to get out and walk then continued with all sorts of false allegations about me and my family!
It seems to me though that there are many more people that are positive, helpful or just plain nice than those that are negative. It can be difficult to remember that though. We are only human as the saying goes and it is all too easy to have a perfectly wonderful day filled with nice encounters ruined by one inconsiderate, rude, spiteful or simply prejudice stranger.
It is easy to be shocked by the attitudes of some people and understandable that we may look to using a mobility aide as some sort of badge - not that any of us do (or should). Sadly, not even such a badge is enough for some people to recognize that we have health issues.
It can be hard at times to stay calm, not get angry or upset or to realize that these strangers do not know us or anything about our health issues and that we will probably never encounter them again. We should try not to let the negatives get at us too much though.
Don't know if it can help you, but I have a simple exercise that I use to help get me through encounters with negative people! In the past, I sometimes went from action (negativity from someone) to reaction (anger, despair or conflict or such) with nothing in between. Now, if in a negative encounter, I visualize a 'STOP' sign in my head. This gives me time to think about the situation and move on with little or no conflict. I'm no doctor and I will not pretend to be an authority on these matters but I do find that exercise useful.
I like your philosophy Roscoe. I was just a little taken aback to find people actively avoiding me in the street. I don't look menacing! I suppose like Beryl says, if I think back to before I was ill I would have looked at people in a different way.
I do use a walking stick when out and about in the dark or if I'm tired, though it's mainly to keep me walking in a straight line, having not fallen (or feeling like I'm about to fall) yet.
Roscoe said:
Why are people, so concerned as to what others think, they do not pay our rent, and I guess to many out there, pre judge others, " Those that mind, don`t matter, and those that matter, don`t mind ", if we can remember, sayings like that, they can help us cope, with the uninformed. Have a great day-we are all in this together, please don`t isolate, share what`s going on, I know at times I don`t, and it`s a very lonely place.
Patsy said:
Yes, definitely get a pole/stick/cane.. that was the first useful information I had from forum.
I always smile too that seems to either bring out the best or worst in people but helps me to see the funny side.
Blimey Mike, do you live in the USA? In the Uk the police don't do the walking and nose touching tests, though I would fail them if they did. They just go straight to the breathaliser then arrest you if positive. Not sure what would happen with a negative test. They'd probably stand around scratching their heads like you say!
MikesBored said:
Before I was diagnosed I got arrested for suspicion of DUI. The physical tests obviously didn't go well but I passed the breath tests. So even though I wasn't drinking the cops took me to a hospital for a drug test. I figure Ive been accused of being drunk quite a few times and it has made me very paranoid about police. Sadly since I now use a scooter for getting around I no longer get accused but yeah it did bother me back then. I hate to say it but cops have no clue what ataxia is so every time someone asks you need to go through a big explanation. My cousin has it too and he also gets stopped a lot, but then again he is a big drinker so he brings that upon himself!. The on.y solution I found was to carry a Dr note that gives some proof there's a medical reason for looking drunk.
Yeah they do the walk the line and tough the nose type tests first. Failing those gives cause to do the breathalyzer I think. Especially when driving they can do those tests.
The strangest place Ive been harassed by cops was in Las Vegas. Whats so strange about it is that public drinking is acceptable and public drunkenness is tolerated unless you aren being a nuisance. I think the cop thought I was underage and drunk because the attitude changed when I showed them ID that showed I was old enough to drink. But that hardly makes up for the scene it causes and the group of onlookers that formed when the police stop someone on the strip when there are so many people around.
But yeah I tended to avoid cops when I was walking around. Now with the mobility devices not only wont I get stopped but I could probably get away with things without being bothered.....not that I do that!
It sounds like you have some rather unpleasent and small minded people where you live.
Like I say it's early days for me just now, and only 3 weeks since I left hospital, so haven't had too much trouble so far. I do like to get out as much as possible and am just trying to come to terms with what has happened and what may or may not happen in the future.
I'm reallly not bothered, or interested, in the reactions of others. I was just a little surprised to find people giving me a second glance or diverting their path unnecessarily. There have been many people who have been helpful without being patronising which is the way I would want it. :o)
On a slightly different topic, I was delighted, and mightily relieved to discover I can still ride my bike. In fact, I can ride it better than I can walk, with no signs at all of being wobbly
Michael said:
I could tell you many stories about the negativity I have experienced in the past five or so years since my ataxia 'kicked in'. I could tell you how many times I have been accused of being drunk (even in the last two years where I have not drank alcohol at all). I might relate the times I have been accused of 'faking it' or being a benefits cheat by people that I have never previously known or met. The amount of times ignorant strangers have told me I do not need my walking sticks or elbow crutches in a rude way is unreal! I have even had strangers deliberately block my path when I use my mobility scooter just out of (seemingly) pure nastiness - one recently told me to get out and walk then continued with all sorts of false allegations about me and my family!