Hi all,
It's me again - but with a different sort of request this time!
Just wondered if anyone has been in a situation where someone has accused you of being drunk. If so, what happened? How did it make you feel?
If you'd like to share a story, please email communications@ataxia.org.uk or comment below.
Kindest regards,
Leanna, Communications
Yes believe it or not was a doctor 😒
That's very disappointing - could I possibly have some more information on what happened? Please feel free to email me communications@ataxia.org.uk if you'd prefer to message privately!
Many thanks,
Leanna
Same here! He commented that I was walking like I was drunk! Here’s the kicker...this was prior to actually getting a diagnosis and the doc was a neurologist! Shocking, ain’t it?
aren't neurologists wonderful? rofl
🤦♀️ I went to warn a neighbour with children that dogs were roaming. She pulled the children away from me, and was abrupt. I suspected it was because I was wobbling and slurring..
I'm sorry to hear that, wobblybee. Could I possibly know some more details of this story, please? You can email communications@ataxia.org.uk if you'd prefer to not write it all on here!
Many thanks,
Leanna
🙂 It was several years ago Leanna, I’m over it, but it’s not forgotten. Roaming dogs came through the hedge and attacked my deaf cat who was sleeping in the garden, sadly my cat needed to be put to sleep due to injuries. My neighbour has small children so I went to warn her...Her Mother was looking after the children, and we’d previously never met..
Hi, I’ve not been called drunk but I have had glares which is very upsetting. It’s better I use my mobility scooter because people can’t see how I walk. Jacqui
Hello Jacqui-A,
Thank you for your comment, but I'm sorry to hear this. People are too quick to judge.
Many thanks,
Leanna
Yes, but almost kindly, in an optician's, I staggered and skittered sideways, I was held by one of the assistants , (she could not have saved me if I was actually going) who suggested 'maybe a little less gin with it?' She was kind but also serious. I am pretty sure the optician who had been helping me was mortified and probably told her. The staff have been super attentive and kind when I have been in since, I did stagger again but the response was one of concern. I very, very rarely go anywhere without either a wheelchair or my spouse's arm now, this is a necessity but I do wonder if I would dare walk down a street if there was a wall to hold onto as I think some days I might be able to, would I fall, I would certainly look drunk or at least very odd some of the time? I have considered having a sash with 'disabled' on it so people know, as I can look absolutely fine until I cannot see a simple change in level, or a kerb or something appears suddenly and my brain reacts, sending me skittering uncontrollably. Apparent anti-social inebriation puts me off, falling with no control currently puts me off more.
Hello Pinjem,
Thank you for sharing - it's interesting to read a story from a different light, and it's good to hear those in the opticians are looking out for you.
Kind regards,
Leanna
Hi Leanna my names Paul I got diegnoised with ataxia twelve years ago about two years after someone at work said to my boss they said I was drunk I felt really bad about it but people at work really helped me but I still felt embarrassed it took me a while to get used to it but it really hurt me what people thought
Hello Paul,
Thanks for sharing this - it must have been a very difficult situation. I'm sorry you were made to feel like this, and I hope it's easier now.
Kind regards,
Leanna
Hi Leanna
Yes, several times. Once at a conference for work. I was in a work's car and I dropped the keys after a policeman wanted to breathalyze me. My colleague didn't stop laughing for 3 days! Another time I was (gently) accused by staff at another conference, and a third time the police stopped my wife, who was driving my car. Someone had telephoned the police to report me drunk driving after a meeting at church.
At no time was I offended, I found it amusing and was just glad that people were being public-spirited. In fact my brother bought me a tee-shirt saying, "I'm not drunk I just walk like this". It hasn't happened recently because I now use a walking stick, and now I have a card explaining Ataxia.
Hello Violasrbest,
Thank you for sharing this story!
It's nice to hear you weren't hurt and were even able to make light of the situation.
Does the ID card work well for you? The reason I ask is because Ataxia UK are launching an campaign to crowdfund for an ID card machine. So all Friends of Ataxia UK will receive a professional card, explaining what ataxia is.
Kind regards,
Leanna
Hi Leanne
I haven't used my card recently because using a walking stick avoids so many questions, but earlier on it was an invaluable aid; I wish I had one before.
I've never had anything said to me, but in the few years after diagnosis when I would be staggering along and often clinging to a wall, I noticed that people would give me a very wide berth and often cross the road to avoid me. I was shocked by their reaction because to be offered some help would have been much more humane. They obviously thought I was drunk.
This doesn't ever happen anymore, it stopped as soon as I started walking with my stick. Now I'm often out in my wheelchair.
However, I'd be the first to joke that I should lay off the whiskey in the morning when I'm all over the place
Xx
Hello ww-wibblywobbly,
Thank you for sharing your story. People can be very quick to judge!
Kind regards,
Leanna
Once a neighbour accused me of being drunk, before I used any visual aid. Now I use a walker. Having a big visual aid thats alls not well tells everyone.
Now other nearby residents keep the disabled parking spaces clear. Often it is the only unused space. And visiting workmen in their white vans occupy the parking space despite the disabled wheelchair universal symbol on the tarmac.
Also an out of his region policeman asked for my address so I said copy it from my Blue Badge. He apologised profusely and back pedalled. He had no clue of my ataxia
Hi FFNick,
Thank you for sharing this.
It's good that nearby residents keep the spaces clear, but very unfortunate to hear about workmen despite the sign.
Kind regards,
Leanna
I think you get thicker skinned, but people with you do not! It does hurt. Visual signs so help.
People react differently the more disabled I become - people could not cope with walking poles but are much better when in my wheel chair. I have a lot of home deliveries and a sign on the really helps - that I am slow and cannot sign x
I think you get thicker skinned, but people with you do not! It does hurt. Visual signs so help.
People react differently the more disabled I become - people could not cope with walking poles but are much better when in my wheel chair.
Useful to know but not really the subject - I have a lot of home deliveries and a sign on the door explaining I am really helps and cannot sign x
The symptom relates to Ataxia. People generally were too polite to ask. My situation is improved, staggering/wobbling has decreased, taken over by tiredness/fatigue. With a snack in the belly and an hour in the recliner I'm good to go for another hour or two.
I no longer appear to be under the influence, my wife keeps me upright. ;-))
Yes, when entering a Sainsburys I staggered into a pile of baskets. The watching security guard raised his eyebrows with a knowing look. I stammered, 'its okay im not drunk, but I have ataxia,' to which he responded laconically,' whatever floats your boat mate.' So embarrassed.
Hello Kaap,
Thank you for sharing your story. I'm sorry to hear about the difficult situation and it's a shame the security was so ignorant!
Would you be happy for us to share this for a campaign we're launching to raise money for an Ataxia UK ID card printing machine, so all Friends of Ataxia UK living with the condition can have a card that helps them explain ataxia.
Many thanks,
Leanna
Hi I'm Ben
I have episodic Ataxia Type 2 and have had it since I was about 10 or 11 (35 now) My type is the rarest. LIke 1 out of 100,000 in the UK have it. So it has been tough to meet like minded people with the same type. I am in one of your groups, but noone with episodic Ataxia unfortunately. Because unlike other types my episodes are quite random brought on by certain triggers, I get quite scared I guess. If I give an example I think like I would like to to the cinema. But then I think it will probably happen at some point (it has before), so it puts me off going if that makes sense. I have been doing this for too long, so I end up just doing what I find comfortable with and not taking risks, but thats no way to live. If I'm alone then there is noone there to help me through it. I am working full time which involves computer work and some physical. I am normally okay at work, although there are times when it does happen, so I just sit down and take it easy.
There was one time when I was like 22 when I was in town and I had a major episode. I couldn't walk and what I used to do was pretend to tie up my show laces, so noone would notice anything was wrong. The thing is I kept doing that until someone thought it was odd, so called the police. Then when the policeman came he thought I was either drunk or on drugs. He called my house, all was explained and my brother came to pick me up but that was probably one of my worst experiences with the condition. I felt embarassed.
Hey Ben,
Thanks so much for your response and sharing your story with me.
Would you be happy for me to use this along with Ataxia UK's campaign which is crowdfunding for a printer machine so all Friends of Ataxia UK can have an ID card that explains ataxia.
If you'd be happy to be involved, would you mind sending me a photo to go along with the story?
Many thanks,
Leanna
Hi Leanna, my husband has Ataxia and yes people have called the police on him thinking he is driving drunk. Fortunately he has a medical note to show when this happens. The first time he felt bad and understand the concerns. People are quick to judge. If my husband would use a cane maybe people won't judge him for being drunk. What upsets me is people thinks it's an imbalance in his ears and he's dizzy, but we know Ataxia has nothing to do with ear problems and dizziness. Try not to get upset and accept that this is going to happen and explain to people you have Ataxia - A balance and gait disease.
Hello there,
Thank you for your response and sharing your story.
It's good to hear your husband has a medical note and that works for him. This relates to the point of my ask on here actually.
Ataxia UK are campaigning to crowdfund for a printer machine. This is so we can offer all Friends of Ataxia UK living with ataxia, an ID card that explains what ataxia is.
You can see the crowdfunder here ataxia.org.uk/Appeal/ataxia...
Kind regards,
Leanna
I've been having ataxia episodes for the past 6 months, so very new to all this. I walk very much like and drunk, and have to literally sit down wherever I need, as if I don't I sadly fall down. I have been accused of being drunk, and when I unfortunately had to sit on a wet kerb or pavement and subsequently got up once recovered I was then even more accused, of being "well drunk" and that I'd also wet myself. Which on both counts were untrue! Soul destroying and bewildering when you know you're not drunk, but equally you don't know why your doing it either. I am now using a wheelchair as my exercise tolerance is around 10 minutes in total.
Hi leeanne,
I've just had it implied to me but not openly said however i remember when I was younger at the theme park with my sisters and parents. My mum had a bloody walking stick and the security guy walked over.. Put her hands on her and told her to leave as she had too much too drink. My mum was crying out of embarrassment and my dad informed the security guy that he would have hands on him in a minute if he didn't take his hand off my mother who suffers from a disability.
I remember going out the odd time with my mum and she would get dirty looks from people who clearly assumed she was drunk in charge of children. My mum hated going outside her house.
Lucy x
Do any of you have intermittent ataxia episodes that come on only after eating a meal?
Tips and Tricks
Hello all! I am new to this site but I wondered if I could have your help, its regarding Occupational Therapy for Ataxia?As a person living with ataxia, what three improvements to your care would make a positive difference to your quality of life?
Would you like to join a Focus Group for Ataxia UK?
