Have You Been Drinking? (HYBD)

That has happened to me on a few times, not only drunk but on drugs. My dr, wrote me a note that says what i have and my symtoms. This has helped me on a few occasions, especially if my speech is slurred.Have a good day.

Hi - I’ve been asked this directly only a few times; however, I’ve had many people ask me what my last sentence was, awkward pauses, etc.

I have another rare illness that’s not chronic; it’s called an Arteriovenous Malformation (AVM)/like a stroke. Someone on here just wrote about using the word, stroke, and how others latch on to that word and have a friend or relative who had a stroke yet it’s nothing like the type of stroke - totally relate to that.

Anyway, the AVM was removed/obliterated; however, without knowing about it, the AVM, located in my cerebellum, erupted which required me to have emergency brain surgery.

Long story longer, when I came to from my coma, I later found out that I was also labeled with ataxia-another thing that I had no idea what is was/what it meant and that it would impair my gait, my speech, etc.

As I recovered (and still am-at a much slower pace now though), but like a few months after I was home from the hospital, I told some close friends and family members that I was asked this HYBD question on a to-go breakfast order that I placed on the phone.

I think that the people who I told this to were just trying to make me feel better and told me that I didn’t sound drunk; however, fast forward a few months when I was at one of many speech therapists.

She had me read this portion of a children’s book into a tape recorder. On the playback, I could barely recognize that it was me and wasn’t able to make out a lot of what I was saying. Talk about denial. I don’t know if I’ve ever cried so hard in my life.

Anyway, it took this playback for me to realize what others heard, and it also forced me to think of ways that I could better communicate without feeling like a total shmuck.

I tell ya, every single day I screw up somehow, and every single day is a lesson for me. I’ve learned to lean on finding the humor in things while still practicing at trying to improve somehow.

Also, just so you know, this topic is mentioned a lot on here; many here struggle with the same issue. Feel free to do a search on the various discussions in the search box - above by the sign in link on slurred speech, etc.

It’s almost comical how the medical professionals ask this question. I remember the first time I read one of my records since ataxia and read, “Patient denies drinking problem.” I had to laugh. It reminded me of the joke, “Have you stopped beating your wife?”. How do you deny that?

Hi Julie your wonderful sense of humour brought a smile to my lips but I have a question about the eyes.

My eyes are sticky when I first wake up and takes 4 or 5 minutes to get them fully open, I think the pupils

are normal but the eyes sting when reading and need drops. Does this sound like an Ataxia symptom ?

It sounds like an allergy problem to me. My oldest son has that problem in the spring. Is this a new issue in the last few weeks? Or have you had it for awhile?

Hi I’m sorry to here that. do you think that I can use your story for my project it’s a visual piece that talks of the affects neurological disorders have on people. Thank you MONEE BROADNAX

Thanks to all.

Quite often, it’s so embarrassing to have to tell the people about your handicap!

If I have said this once I will say it one million times because someone will not understand me. DO not be embarrassed about SCA. I retired as a police officer and I worked in an emergency room as a part-time job. The first thing we want to know is if you are in an life-threatening situation. The second thing is do you have an ailment that will cause us problems understanding you or helping you move around. Believe it or not we have a heart we understand these things. We see them every day in our jobs. Additionally we have friends who have been injured with the same symptoms that you and I have.

I completely agree with Ran. There is no reason on this earth for anyone to be embarrassed by any handicap of any kind. We are what we are.

Hi I too have had the same question asked numerous times. I found this fun little card on line by someone in the UK It is cute and I have copied it and laminated it and keep it in my purse at all times. It does come in handy.

Also if you write to the National Ataxia Foundation asking them for Ataxia cards they will send you some cards that explain Ataxia.

:National Ataxia Foundation, Phone: 763-■■■■■■■■ E-Mail: ■■■■■■■■■■■■■■ Web:www.ataxia.org I e-mailed them and they sent me 3 cards.

Hope you can open the little fun picture it does the trick with a smile.

254-Ataxiafuncard.pdf (116 KB)