Hi Friends,
About 6 weeks ago, I posted that I broke my foot one morning at 3am and had to call an ambulance for transport to the hospital. I was asked by the dispatcher, as well as the ambulance personnel, and hospital personnel if I had been drinking (I was slurring badly due to my CA and Trazadone sleeping pull). I had to explain multiple times about CA.
I was wondering, have any others here been asked HYBD? What are your stories?
With a fall and slurred speech, it's the first question asked by medical personel not familiar with neurological disorders. My brother in law while in group with my hubby and some of his friends was denied entrance to a club because of his ataxic walk and slurred speech.
Are you kidding...I have a hard time explaining..even to those.that are family and friends...and I..LIVE with a few of them...
So explaining to...ANYONE else is futal...if you want to VENT.we're..all you've got...
I have a medical ID bracelet that says I have ataxia. Maybe it would help?
Medical ID bracelet is a great idea.
Yes, primarily by doctors, but there again, isn`t ignorance fashionable?
I was actually the DD for brother and his wife and got pulled over about 2 am because my license plate had expired (another story). The police wanted me to go through all of their DUI tests but I informed them of my ataxia and that I would fail any balance tests. They didn't seem to be happy about it but they adjusted the tests to what I could do. Since then I've been considering getting a letter from my doctor explaining what I have. I see there was a suggestion of a medical ID bracelet. I think this is a great idea but the letter might help non-medical people understand without having to explain it.
I haven’t been asked as much as I’ve been treated as if I’m drunk. Like one evening my friend and I were invited to a get together with all women. It was a promotion to sell products. There was alcohol but I only had one drink. When we left I went to get into my car and two ladies were standing outside. It was dark, and I can’t balance in the dark so I stumbled my way to the car grabbing onto stuff to hold me up. I heard the ladies talk about how wasted I was and they couldn’t believe I would drive. I yelled that I wasn’t drunk, I had a disability with balance issues. They laughed and said “US too!” I was humiliated. Then worried in case someone called the cops to report me as a drunk driver. I know there is no way I would pass any tests except for breathalyzer. My friend kept reassuring me saying not to listen, but I was almost in tears.
I totally understand. That's why I don't drink at all around strangers and I may have 1-2 around friends. Even if you try to explain, people don't understand and they think you're trying to cover up. If you don't drink around them they have no excuse. I know I enjoy a drink now and then but I choose to do it around people that know me, then there is no explanation. This sucks but I get tired of trying to explain so I just try not to give them any ammunition.
MissCake2 said:
I haven't been asked as much as I've been treated as if I'm drunk. Like one evening my friend and I were invited to a get together with all women. It was a promotion to sell products. There was alcohol but I only had one drink. When we left I went to get into my car and two ladies were standing outside. It was dark, and I can't balance in the dark so I stumbled my way to the car grabbing onto stuff to hold me up. I heard the ladies talk about how wasted I was and they couldn't believe I would drive. I yelled that I wasn't drunk, I had a disability with balance issues. They laughed and said "US too!" I was humiliated. Then worried in case someone called the cops to report me as a drunk driver. I know there is no way I would pass any tests except for breathalyzer. My friend kept reassuring me saying not to listen, but I was almost in tears.
Yes that is what is best. I rarely drink because sometimes it triggers attacks and because I am strong in my faith. People who know me know this about me, but I learned the hard way that people who don’t will assume the worst. It’s disheartening.
krod3027 said:
I totally understand. That’s why I don’t drink at all around strangers and I may have 1-2 around friends. Even if you try to explain, people don’t understand and they think you’re trying to cover up. If you don’t drink around them they have no excuse. I know I enjoy a drink now and then but I choose to do it around people that know me, then there is no explanation. This sucks but I get tired of trying to explain so I just try not to give them any ammunition.
MissCake2 said:I haven’t been asked as much as I’ve been treated as if I’m drunk. Like one evening my friend and I were invited to a get together with all women. It was a promotion to sell products. There was alcohol but I only had one drink. When we left I went to get into my car and two ladies were standing outside. It was dark, and I can’t balance in the dark so I stumbled my way to the car grabbing onto stuff to hold me up. I heard the ladies talk about how wasted I was and they couldn’t believe I would drive. I yelled that I wasn’t drunk, I had a disability with balance issues. They laughed and said “US too!” I was humiliated. Then worried in case someone called the cops to report me as a drunk driver. I know there is no way I would pass any tests except for breathalyzer. My friend kept reassuring me saying not to listen, but I was almost in tears.
Nobody has yet asked me but I see how they look at me when I stagger around and have a hard time even holding on to anything. My EA can happen any time, but I can create it by sitting a little and then getting up. That usually happens in doctors' offices, and even there I have to explain when they ask me "are you all'right?"
Norbert
Absolutely. Ignorance seems to be the hallmark of many physicians. They often go out of their ways to ignore obvious symptoms, too.
Patrick said:
Yes, primarily by doctors, but there again, isn`t ignorance fashionable?
Asked on a daily basis and I have to try and explain. I don’t drink in public anymore I would be cut off… I hate those stares people give.
Dear Suzi, I fell backwards in my kitchen in January, 2014, due to my ataxia and losing my balance. I hit the back of my head on the lower corner of the cabinets, cutting it. Fortunately my husband was home, heard me fall and came straight away. Ones head really bleeds (blood was running down my neck), and because the cut was in the back, I couldn't see what I had done. My husband patched me up and took me to emergency at our local hospital. I was asked several times if I'd been drinking (by nurses and doctors), and had to explain my ataxia and symptoms several times. I ended up needing nine staples to close the wound and sported quite a lump for several days. Because I drive, I carry a couple cards in my wallet, one from my neurologist and one from the National Ataxia Foundation (NAF), explaining ataxia and symptoms. I also have a med-alert bracelet.;o)
I was just thinking while reading, how many doctors visits are made just to be profitable when in reality the visit can not help you in any way. I was just reading where one of our members was going twice a week since January. If a visit is really unnecessary you should maybe have an option to refuse. Jerry
I recently purchased the medic alert bracelet n their service. There is a toll free number on back. I’m always concerned that if something happened n I was by myself r if police stop me they would realize there might be a “real” issue n not just assume someone has been drinking. The time wasted with them thinking drinking could cost someone their life if it was blood pressure r other weird things from ataxia. All my families contact numbers, doctors, meds, etc are listed with the service.
My cousin has developed a sort of phobia for the police, since they stopped her, asked if she was drunk and wanted to drive her home. This was in the early stages after she had gotten her diagnosis, and she hadn't accepted that she had ataxia. She tried to explain that she was just out walking, but they did not believe her, not untill her mother came and said leave us alone she is sick. After that she gets really nervous when she sees the police and she tenses up which affectes her balance even more. Also after that she does not like to walk alone anywhere.
Heard alot of people talking behind her back saying she's drunk, or to her face, and when she tries to explain they say things like "sure honey"
I have also been with her when she as been denied access to clubs, even though she's been the only sober one, the would not believe her or me or any other in our party.
This happened to my husband a few weeks ago when he was walking around a store one morning. It was an eye opener for him - he is now pursuing speech and physical therapy. But as his SCA8 progresses, I'm sure it will become more common.
Suzi,
I have been followed by the police, after someone apparently called and reported that I was drunk after seeing me staggering through the parking lot to my car. The police followed me all the way home, but never pulled me over, thank goodness. I now have a card that can be ordered from the National Ataxia Foundation saying that I have Ataxia. On one side it explains that Ataxia may make you appear drunk. It has their phone number if they want more information. On the other side you fill it out with your name and what type of Ataxia you have, your doctor's name and phone number. It is like a business card you can carry with you. I agree that a letter from your doctor probably would work better with the police. Sometimes you get one who isn't all that accomodating to medical problems. The cards are free if you are a member.
Nancy J
I havn't had any issues with the police concerning appearing drunk yet! However I was having a Very bad day about 4-5 years ago was walking to the post office to get a few basic food bits like milk and bread. I was stumbling and swaying all over I know I looked drunk because I was struggling myself as a van driver pulled over and was asking if I was ok and needed emergency services at the time I was under the weather and pale with it too. Kept saying No i have ataxia he didn't believe me and promptly called for an ambulance service it unnerved me big time because first my safety with a stranger in a van pulling up immediately put me on guard in-case he tried anything funny. I was brought up to be wary of strangers pulling up unless to ask directions if do talk from a distance.
He called 999 and About five minutes later the ambulance arrived and whisked me off to hospital I was so upset at the time I didn't have my ataxia card then I only got that about 2 years ago. They said my heart rate was a tad high and I was very shakey and uncoordinated they were convinced I was on some kind of drug and kept drilling me have you taken anything prescription or illegal drugs,. Or any drinks for that matter kept telling them no which they didn't believe still kept drilling me in the end to stop them asking I said sure i've smoked pot * I haven't smoked it in a VERY long time* after that they left me alone. In hindsight that wasn't the best thing to say but in ER I said look I have ataxia it's a balance and co ordination problem, i've been a bit sick for few days and today was a BAD day the fact is I don't smoke pot or take any medications , I haven't drank anything alcoholic in several months the paramedics did not believe me so to stop them asking I told em that.
The nurse apologized profusely for their behavior Dr checked me over they did however make me eat some buttered toast due to sugar level being a bit low at the time he said when your sick it is normal for your heart rate to be increased and being ataxic it's going to hit you harder than a non disabled person please make sure you eat and drink to keep yourself going you had us all worried due to increased cardiac output and paleness. Once I perked up with the food and cardiac rhythm was back to normal they discharged me took about 3 hours in all. I understand the van driver was being cautious seeing a stumbling woman all over the place and did appreciate his kind gesture but the repercussion and embarrassment of emergency services not believing I was sober left me feeling very wary of going out in public for about 6 months on bad days.
I never knew you could get ID alert braces I may look into that I do however need an Ataxia card for out here n the states as loved the security of having my british one in my purse if any problems arose concerning police or emergency services assuming I was drunk. I don't drive out here and only have 1 alcoholic drink in public if me and my husband do go out for a bite to eat as a date. It's mainly to be safe and because I do not want the whole your drunk in public issue when actually I'm nearly always stone cold sober.. If having a gathering here at our place for a special occasion I may have 2-3 drinks and that's my limit because I know alcohol affects balance an co-ordination even more so as an ataxic person,. I've always joked if I had to do a sobriety test sober I'd fail miserably because I can't walk in a straight line, cannot stand on one foot to save my life OR touch my nose with my eyes shut i'd be carted off as a drunk person when I'm not drunk. My step kids laugh but after being with me solidly for the last year they now realize i'm actually telling the truth.and say oh god you would be as well.