I was going to pick up a prescription from a near by chemist with my daughter we parked up went down in the lift picked up the prescription and back to the car simple but no my daughter has ca too also autism ( she is 17 more like 11 bless) amount other things and she started trying to run off in the car park I’m walking faster picture the scene not 😌 so we get to the car there is the broadway first aider he has followed us to the car and asked me if I’m “ ok to drive” I was parked in a disabled bay as well I told him I had Ataxia and he replied OK I have been upset since I wrote to the Broadway manager explaining what had happened and said if the staff in question had been trained or just evaluated the situation a bit better it would spare people the upset in the future to his credit he wrote back and said how extremely concerned he was to hear about it and that he will look into it and get back to me it’s really cut deep ...
Can anyone else share the heart ache you feel wh... - Ataxia UK
Can anyone else share the heart ache you feel when approached about being drunk when you have Cerebellar Ataxia?
Sorry you had to go through that. Sounds like a loaded day for you and you're daughter. I find most people don't know anything about ataxia and while I'm slowly trying to educate people I feel close to, it took me a long time to understand just a little bit so I don't expect them to really.
I have a reason to want to know about ataxia whereas they don't unless they're the type who like looking things up in a medical dictionary. 🤔 😯 I just say ataxia means disordered so I walk in a disordered fashion. You know you weren't drunk so hold your head high and don't let it get you down. He probably felt terrible afterwards.
If you put yourself in his shoes you can even commend his effort to try and keep someone he thought was "impaired" from driving out into traffic. I've been hit by two impaired drivers. Sitting in the police car with them the odor of alcohol was clearly in the air but neither were cited or fined. Thankfully they were in town and not driving fast but I wish someone would have stopped them from getting into their cars before the smashed up mine. That was 30 years ago.
Great that you can still drive. I hope I can keep on but I can't take my eyes off the road for a second. Take care and stay safe.
Sometimes when I need to pop in to the shop at 9 / 10 in the morning and I’m off balance people jumping off when see me walking like that. They throw nasty looks at me like :” it’s only 10 am and you are already drunk?!” . The same at the shop, once cashier refused to served me. I stood in a que explaining myself that I’m not drunk ( it was so hard as my speech was affected too ) and I ended up in tears. Everytime I promise myself I will ignore it but when comes to it it upsets me really badly.
We can only hope that one day people will stop judge....
Yes that's about it......blind judgement. I've had those looks, maybe not as obvious as others but a truck driver once gave me that look when I walked across the street and others when on a walking trail. I couldn't figure it out and then it dawned on me. I guess I'm becoming more aware of it as the ataxia progresses, and some days are worse than others. I'm in no way belittling the pain. I just don't take it so serious because I have a sense of humor about most things that bug me.
Educating people would help but there will always be those that misjudge. We could wear a sign around our necks but it would be so cumbersome. 😎 😉 Laugh and the world laughs with you....cry and we cry alone. (My mother told me). It really bugs people when they cant get to you. I love that. I'm a tough old hen. Ha! (But not all the time).
Love that! Thank u. I’m trying to laugh at it but makes me looks more drunk sometimes I think 😂. Sometimes I think I don’t have to justify myself to anybody but other days I just want to shout to educate them ... No win win really 😂x
the judgmental look i get is about parking in the disabled bay. 60 somethings often glare at me, until my door slides open and the ramp descends 😂. i've joked with others about these scenarios and i've noticed quite a few disabled people have twisted senses of humour. it's our way of coping. for instance, on a palm sunday years ago i was using my walker and trying to get to the toilet. i'd suffered a relapse and when i had to go, i HAD to go. this woman stood in the middle of the packed foyer. even when her companions nudged her and she looked at me, she wouldn't move... so i rolled over her foot. when she glared at me, i yelled, UH OH! and went on my way.😂
i just can't with the judgmental people. i dare anyone of them to step into my wobbling shoes for 6 hours and find the courage to laugh like i do.
Off topic but firefighters in BC not far from us have to deal with people who won't evacuate under orders and then must try and help them when it gets critical. These people blamed the firefighters for the situation they are in on the news...so Selfish! So if people don't want to move for a fire then maybe not for a walker? Seems like a trait we see more and more in these last days. MEism....new religion.
rideabike: that is ridiculous, those poor fire fighters! as if they don't have a difficult enough job.
With over 300 fires in BC alone yes I agree, it is diffcult enough for them. I'm sure her rant didn't get her any Brownie points with viewers. People just make themselves look ridiculous sometimes.
Oh bless you I have been there myself it is so humiliating and upsetting people are so quick to judge there has to be a light shone on our conditions maybe an advert or something to change people’s perceptions I have come to the conclusion I will have to take my walking stick with me when I go out as a visual sign that I have a condition I’m not drunk take care and Thankyou for your post x
Bless you Thankyou for taking the time to reply it’s lovely to hear someone else’s take on it from both sides as well and yes it was commendable to check I wasn’t under the influence in that respect one never knows and I’m sorry to hear of your terrible encounters in the past with drunk drivers how awful 😞 but there is karma if you believe in it 😂 I wish you all the best my friend take care x
I had the worst experience a few years ago and would now like to share it so that other people know they are not alone. I was a Teaching Assistant in a school and there was an advert on the TV about a Dad that comes home drunk and the kids can smell alcohol on his breath and take the mickey. Rather than listening to the Teacher the boy replayed the advert for my benefit, this was done in silence but we both understood, he thought I was drunk. I was so upset that I nearly left the school. After that I wore my Ataxia badge to make people aware, people are horrible, I was actually pleased when my condition progressed so that people could see that I was disabled and not drunk.
Oh how awful I am so sorry to hear that people’s perceptions must change awareness must be brought on our conditions take care and Thankyou for sharing xx
I have experience similar perceptions from others. I’ve tried to teach myself to try to walk as normal looking as possible; however, there are some days, where I stagger and cannot walk straight, no matter what I do! So, I sure can relate to this frustrating aspect of having Cerebellar Ataxia!
Ataxia has many many problems like most disabilities I suppose and being accused of being drunk is one of them and because this is a disability that few people have heard off including GPs it makes it worse and I really feel your upset and frustration.
I must admit part of my broken brain can see the other side of the coin as well. In 1978 I was in a really bad car accident and lost three very good friends due to the diver who had too much to drink, all three died in a really horrendous way, the average age was 20.
In fact if you believe in a fairy god mother I have a story that will strengthen your belief.
In 2008 my daughter who was 19 at the time was involved in a car accident although no alcohol was involved she had a very badly damaged left arm and needed several operations to put it right, I was first to get to her as it was a mile from my house, I did what I could but defiantly not the best day of my life.
So I’ve seen and felt the devastation car accidents can do so there is a part of me that would be pleased if I was challenged getting into my car.
If I seen someone getting into a car I thought was drunk and never challenged them to find out later he or she had killed someone then it defiantly wouldn’t feel good about myself.
So you say strong my friend and don’t let it get you down.
You are stronger than you think.
Take care my friend.
Who Cares Wins.
You have such a wonderful attitude.
Sorry to hear of your experience.
Just wondering whether you are a member of Ataxia UK? They issue members with a card explaining ataxia, which is so much easier than having to explain yourself.
Take care
Before I’d reached the point of having to use a walking stick for safety, I felt snubbed by a neighbour because of instability and slurring, she’d obviously jumped to the wrong conclusion. It definitely helps to carry a walking stick, people can instantly see you need some sort of aid and no assumptions are made.
I am so sorry for what hapened to you. I now also have ataxia. In my twenties when we did not know anything about ataxia and my dad began to show symptoms and no one knew what it was. I feel so bad today because my dad came to visit one day and from my balcony I watched him get out of the car and walk accross the street to my apartment building. He struggled to keep his balance and I remember then thinking, "how can he be drunk at nine in the morning" and told him so, he swore he had nothing to drink except coffee. Today I know what it feels like to be accused of being drunk. The other day a friend of mine took me shopping, I had a cane and we went to the disabled pay point, the cashier said she would help me but not my friend who should stand in the queue. My friend said to her no problem "you hold her while I am in the queue and get to a cashier" Well, she was not going to hold me and helped as well. I did complain to the manager and he apologised and now the cashier always helps us together. I cannot go on my own to a shop, I always need the support of someone else .I am glad you are still able to drive.
best wishes
Isabel
The cane works for me. Doesn’t do hardly anything to help my terrible balance, but a great sign to all that something is wrong me and I’m not drunk. I’ve never been approached by anyone in a negative way. They all seem to understand that I am really struggling with some problem. I’ve never had to or tried to explain ataxia to strangers
Before I walked with a cane, I noticed people would cross the street to avoid me, and give me dark looks. They obviously thought I was drunk and nobody ever offered to help me. I had to hold onto a church wall all the way round to the doorway one day.
Then I had to start using a cane (now two or a wheelchair). People's attitude completely changed. they became helpful, didn't avoid me, and if I'm walking I can see them wondering what's wrong with me rather than judging me for being drunk!
But seeing things from the car park attendant's point of view, I actually think it's great that he challenged you. If you have speech problems then ask ataxia UK for the card to explain your condition.
Great your still walking without aides and driving 
Bless u! I am working in special needs school so I can relate to your situation ( the school knew about my ataxia and gave me to work with autistic runner 🤦🏻♀️). How many times I have been crying .... cannot even count now 😂There is no understanding or sometimes I just think people are too ignorant to understand. Take care lovely x
Oh my gosh 😳 I would think a special needs school would be more clued up 😩 I feel your frustrations and every layer of emotions going on there you are not alone bless you my friend xx
HI I asked ATAXIA UK for a card ,then if someone makes me feel hurt by people . its good I take my card out and say please read this card. it says. I am NOT drunk. I may be clumsy, I may fall over, my speech may be slurred, I may walk as if I'm drunk, I am not on drugsI HAVE A MEDICAL CONDITION : ATAXIA. on the back of the card it says among other things. There is currently no cure.
I find that its them that is left saying sorry I did not know.!!!!!!!!!!!!!!!
give ATAXIA UK a call and ask them to send you a card or two, I'm sure they will help and send you out a card . there helpline is 08456440606
Hi Thankyou so much I will take care xx
A sunflower lanyard or wristband can help too. Just to signal something else is going on. I’m not sure how deft I’d be getting a card out when upset. With everyone having to wear face masks, I notice more and more people wearing sunflowers to signal they’re exempt, so I think it’s becoming a more recognisable sign.
HelloThankyou so much for that I had not heard of the sunflower version I will look into it take care and Thankyou for posting back
when i was first dealing with ataxia, i dreaded leaving the house because i knew i'd get strong reactions from people. i remember once going for a takeaway and a 50 something man (i was in my 20's at the time) stopped as people moved around him, turned and stared at me, watching until i passed him. i went to a doctor's appointment once, parked and maneuvered out of the SUV i drove then. a man sitting on a park bench held up his brown bagged bottle and saluted me with a sloppy grin.
i vividly remember the stabs of emotional pain. i still deal with dummies. last week, a 9 or 10 year old girl elbowed her mum and told her to stop staring at me (side note: hope for more empathetic adults in the future? 🤞), but i just can't be bothered. i think it takes time to get used to it, though we shouldn't have to and it's good you notified the company.
stay strong. 🤗
Hello Blankettime1 I really admire your strength i to was diagnosed in my twenties people lack awareness or a just to quick to judge and it can be crushing I think growing de sensitised and keeping your temper wins 😊
Morning my lovely friend.
Please don’t let this get you down it’s the people that stare have a problem more than we have. This used to happen to my good friend robo chop when he stood on an IED and lost his leg, even though when he was shouting I’ve lost my leg we told him you haven’t lost it it’s by that tree down the hill, he couldn’t give a hoot now ( he used to be called Robo cop but he put on a little weight )
You are stronger than you think.
Stay well my best friend 👍🏻 😊
Hello Paul 456 Thankyou for your support and kind words you sound a lovely friend 😊 take care x
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