Have You Been Drinking? (HYBD)

I broke my foot this past Thursday night. I tripped on my own foot.

Called the 911 dispatcher for an ambulance to the Hospital, it was 3:00 in the am, was asked by the dispatcher : "Have You Been Drinking, Mam" and I had to explain about my Ataxia.

Then, upon arriving at the Hospital, was asked by the ER nurse, "HYBD" and again explained Ataxia.

The ER doctor asked "HYBD" and the list goes on.......

It was funny at the beginning, then it quickly turned to embaresment. I had an xray and MRI. Its fractured in 3 places. I hobbled around all weekend. Today I see my Orthapedic Doc for a boot.

You can understand my frustration and embarasment.

How many times and under what conditions have you been asked the question HYBD?

Unbelievable Suzi but the sad truth is very few people including those in the healthcare field

have little information on Ataxia. It seems to be so rare even Neurologists have little

interest spending time diagnosing what type of Ataxia it is .So it is up to us to do the research

and to ask a lot of questions and insist on their attention to treat our disease.


That sound as if you could have predicted what the responses would be.

I hope you are doing well, and continue doing so.


Have You Been Drinking? (HYBD) - sad but that what lots of people think

I was so sick of this I made a notice that briefly says 'I am not drunk or drugged but I have a brain disease' which I have used hundreds of times, it is a great help!

I agree i only know what i do, because of hours of research ive put in…
in the past (5) years ive been acused of being drunk by medical professals & the police atleast 10 times!!!

Oh, yes. Even in my own family, my son keeps saying, "What's wrong with you?" HYBD?

At a meeting last night, I stumbled getting out of my seat and I saw the eyes watching me with that question on their faces.. I also heard myself slur a few words while speaking, and I began thinking, "ok, from now on, don't say anything!" It's very embarrassing and sad.

Umigal said:

Oh, yes. Even in my own family, my son keeps saying, "What's wrong with you?" HYBD?

At a meeting last night, I stumbled getting out of my seat and I saw the eyes watching me with that question on their faces.. I also heard myself slur a few words while speaking, and I began thinking, "ok, from now on, don't say anything!" It's very embarrassing and sad.

Folks I retired after 37 years in law enforcement. From 1974 until 2010 there were major changes in protocol between LE and citizens with diseases such as ours. We knew what to do if we were made aware of the medical problem. Now you may think I am silly but, I start every contact with anyone that doesn’t know me with I have a brain disease – SPA and the signs that I have. You get the road block out of the way. Look we can’t hide it, cover it, or run for it. It is what God gave us and might as well fess up to it. I will reinforce what I said tell them and get it out of the way. Sure you will find a hard ass dumb cop that will show his/her rear but, so is life

Over the past 14 years I’ve had broken bones (9 times) ,some stitches, and numerous contusions and I have NEVER been asked that. Sometimes I am asked if I feel “safe” at home, since my hubby brought me in. Sorry you are being asked that.

I am 100% with Ran. I do the same. I tell people I had a stroke and was left with ataxia and I explain that although I appear drunk, I am not. Just lost my balance. Of course, since they heard the word stroke, they give me the usual encouragement " oh but you know, my Mom/Dad/uncle/cousin had a stroke and you would never know it now. It takes years sometimes"…
So I have to explain that I have made all the progress possible, and that it is what it is. The doctors told me that I was lucky to be alive as it was a big stroke, so I am happy to be here to tell the story.

Also, there is a point I would like to make, at the risk of ruffling a few feathers, although it is not my intention at all, as I have great respect and admiration for all of you.
I have another rare disease called long QT syndrome. Do you know what it is? Probably not. It causes sudden death as your heart goes into arrest.It took doctors from the time I was 18 till I reached 47 to finally diagnose me. Why? because it was a RARE disease. Nothing was known about it.
A cardiologist electro-physiologist who had put me on a heart monitor for several days, and I was finally diagnosed with LQTS, a rare genetic disorder of the electrical system of the heart. None of the doctors I was seeing ever heard about it. One told me he vaguely remember a mention about it from medical school. In 1991, when I was diagnosed, research was in its infancy. 23 years later, many more people are aware of it and I am no more such a rare oddity. I have an implanted defibrillator in my chest which has saved my life several times. Research took a long time, but although there is no cure for it, there are medicines that help and if course, defibrillators.

All this to tell you that doctors cannot and should not be blamed for their ignorance about something they have never heard of. You might be the only ataxia patient they will ever see. Other doctors will never see one in their entire career. The ones who know about it can only go by what is known so far. No, not enough is known, but remember, there are not enough cases out there ( thank goodness, but also unfortunately, to help them in their work.

In conclusion, do what Ran said. Do not wait until they ask you if you are drunk, tell them you are not before any question.
Let us be realistic, if you did not have ataxia and did not know about it and someone came towards you wobbling around and slurring their speech, what would be your first thought? I’ll let you finish my sentence…

Keep smiling! :slight_smile:

I've experienced this also. 2 DUI's that I got out of. One took 3 years and I lost my clearance. They thought I was drunk at work and I still get HYBD all the time. I find it easier to use my rollator all the time. It's safer and no one usually bothers me. Good luck in your recovery Suzi! Good luck to everyone!

When I first had symptoms,but had not been diagnosed I did some research and found tee-shirts saying "I'm not drunk, I have Ataxia". Sometimes wish I had one. So far haven't had strangers ask me that, but feel that waya lot.. Hubby teases me about "being drunk" all the time and talked to son on phone one evening when very tired, he said then I sounded drunk.

I agree that it is probably best to tell others about our condition before the other person has a chance to comment or ask about it.

I always use a walker or crutches. I can't walk well anyway, so no one ever knows for sure if I've been drinking!!! And they've told me I can't drive so all I could get is Stumbling Under the Influence. Or Public Drunkenness, which I know could be quite serious.

Seriously, I haven't had this problem yet, but my voice has only recently begun to go. I can see it coming.

I followed links from a page I saw somewhere to a British site that provided some kind of ID card that identified an ataxia sufferer for the purpose of providing support if the issue of sobriety arose. I filled out everything, then found out I had to have a Great Britain address.

Some US group should do this. It would be great to have a card with my doctor's signature. I travel by air alone from time to time and ending up in jail somewhere trying to plead my case on a bad day with my voice is not something I want to think about!

Sorry for your trouble. I hope all is well now!


Dear Suzi, I'm so sorry about your broken foot, as well as being questioned about drinking due to ataxia! Yes been there and done that, sorry to say. I fell (lost my balance due to my ataxia) and cut the back of my head requiring nine staples. Although I explained at emergency of hospital that I had ataxia and my symptoms, I also was asked if I'd been drinking a few times. Also, I was pulled over by the police a couple years ago due to someone (?) reporting I was ''driving drunk", which I wasn't. As I would NEVER drink and drive, and consider myself a good driver, thank goodness I always carry cards that explains my ataxia in my wallet (one from the National Ataxia Foundation-NAF, and one from my speech therapist). I did not get a ticket, only an apology...,ha! The police were only doing their job, which protects all of us. It's hard enough to deal with ataxia let alone having to constantly explain it! Oh well, it is what it is! Hope your foot heals quickly... ,;o)

I Had a Neurologist give me a note explaining my Symptoms to Police and Other Civil Servants So no HYBD but wouldn't you know that in 7 years I have never had to use it , but I bet if I never had it everyone would wan't to to know wsup with me, I do hope your foot is OK

There was a time before Skeeter, before a rollator/walker or even trekking poles...

In retrospect, I think I was trying to convince myself that I wasn't noticeably disabled. Although I'm somewhat of a denial advocate, this attitude often got me in more trouble than it benefited me. I actually thought if I acted normally, no one would think something was amiss. They did. People who knew me well, knew right away something was up, but casual acquaintances and strangers just thought I was impaired for some reason. Pick your impairment of choice--drugs (nope), MS/stroke (nope), dementia (not yet), alcohol (probably). But, that just wouldn't do. Pretending that my struggles were only internal and not obvious, wasn't compatible with preserving my self-image.

In the middle of a nice day, I decided to drive down to a local bike shop to buy my husband a birthday gift. I did and drove home. At the time, I had a dog, Lucy, who felt her "job" was to frighten any potential intruder at the front door with her fearsome bark. Never successfully able to train her that not everyone was a threat, I had to close her off in the family room in order to answer the door(setting the stage, here...).

Lucy, the barking menace

About twenty minutes after getting home, three Lake Oswego policemen (must have been a slow day at the department) were at my door because the bike shop had reported me for suspected drunk driving. They were concerned about my ataxic gait and slurred speech. It was time to face up to what Ataxia (even early stages) looked like to others.

Not quite this bad, but close.

I was both embarrassed and mad, but part of me was grudgingly admiring of the people at the bike shop. They didn't know me and could only observe my symptoms and be concerned for public safety. Not everyone has the courage to turn in someone they believe might be intoxicated. But, my wicked witch side won out, so I was mostly indignant and mad.

Stern faced Police: Are you Mrs. Schuman and were you just at the Lake Oswego bike shop? Can we talk to you?

I thought to myself, "Stay calm Tam, take a deep breathe, don't cry and definitely don't let them see you sweat. You know what this is about and you didn't do anything wrong." Still, when three uniformed cops come to your house, you feel like a criminal.

Rattled Tammy: Yes I am, yes I was, and yes you can. Lucy was going berserk barking and nothing I could do would convince her that I was not going to be shot by intruders.

Cautious Police: Could you put the dog away? I put her in the family room, closed the pocket door, and returned. Have you been drinking today? It was around noon and although I look forward to wine, we're talking evening!

Courteous Tammy: I know what this is about and although I may have appeared drunk at the bike shop, I haven't had anything to drink. I have a type of Ataxia.

I assumed that my explanation would suffice and was shocked when they didn't accept it at face value and leave.

Persistent Police: We need to administer some field sobriety tests.

Now, I watch TV enough to know the tests are probably walking a straight line (can't do that), walking heel and toe (definitely can't do that), stretching arms out to side and bringing index finger to nose (can't dependably do that), and standing on one leg (are you kidding me?). Falling over would be a dead giveaway of test failure.

Heel toe? Gee, I don't think so...

A brilliant thought occurred to me after I informed them I would fail any sobriety tests.

Helpful Tammy: You could call my neurologist or the Movement Disorders Clinic or I could take a breathalyzer test. Yes, I did know they couldn't legally require me to, but I also knew a breathalyzer test would be negative and I was starting to sweat.

Uncooperative Police: We can't do that. Could you put your hands out to your side and alternately touch your nose?

Angry Tammy: Fine! Consider yourselves warned...

Since this is a common neurological assessment exam, I was pretty familiar with it. I obviously did a passable job, because the police seemed satisfied and left, their standards being much lower than my neurologist's. I had managed to stab myself in the eye only once. But I didn't confess to some random crime I hadn't committed and I didn't cry.

At a hastily made appointment later that week, my neurologist gave me a letter verifying that I indeed do have a Spinocerebellar Ataxia. I made several copies of the letter–one for each car, one for me, my husband, the children, the Lake Oswego police.

My daughter-in-law helped me design a "business" card with my picture and contact information on one side, a brief explanation of SCA (and spelling) on the other. I keep them on me, on Skeeter and hand them out to everyone, whether they want one or not; if they trash it, fine. In the event I'm found unconcious on the side of the road, people know who I am, what I look like, what I do and don't have and while I may appear impaired, I'm not (at least, not necessarily). That little card saves me the need to explain SCA for the thousandth time. I found informing people spares them from asking. Although Skeeter and my assorted assistive devices help a lot now simply by being indicative of a person with disabilities, retailers are relieved to have an explanation. Only a few will cautiously ask, but everyone wonders in silence.



The lesson: Give it up–it shows. People notice.

As a former ER nurse, you were “pigeon holed” as a drinker without any hard evidence…such as, reeking of booze. The EMT’s record was probably no looked at closely so they did not know you had been asked. That being said, the nurses notes would have a notation and should have been read. The doctor should have known from her notes and not had to go further. The most Important observation was totally overlooked through ignorance or misinformation…that being your history of ataxia.

Make a copy of the facts about ataxia and send it to the hospital, clearly marked for the ER. Add a note about your embarrassment. If we do not teach them, believe me most doctor and nurses do not have a clue about the facts about ataxia.

Hello Suzi
This experience is very bad, painful, I personally did not feel it on the skin except when I drink and I'm actually much worse than the others. lol But my father, I recently learned, was arrested for drunk driving. I inherited ataxia him, who has passed away. I was very sorry to hear that. It's unfortunate.
I live explaining what's ataxia. People need to know.


Paola - from Brazil

Ana Paola. What a beautiful name! Matches the beautiful face! :slight_smile: