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AVM Survivors Network

Poor balance/walking


#1

Has anyone ever been accused of being over the alcohol limit due to poor balance/walking please? This happened to me last week and I am very upset/embarrassed.


#2

By a police officer no; but my wife and friends say I walk like a drunken sailor due to my balance coordination issues.
To be honest I don’t let comments like that bother me as the people that know me and I know I don’t have any control over it.


#3

Frustrating for sure Lulu. I can tell you from my vantage that I personally understand a lot of challenges people face “thanks” to my AVM experiences. I say this in a wide range of things and really specifically to the non visible injuries and illnesses. I can’t speak for the person you dealt with but would be willing to bet the effects of an AVM on your balance are far beyond their understanding of potential causes. The default was to the alcohol cause, which most adults are familiar with and have observed at some point. Not sure if this makes sense, but I equate a lot of challenges we face to a lot of mental health issues that most don’t understand, again most often not visible. John.


#4

Thanks Mike. Glad I’m not alone. It upset me because I was picking my daughter up from an extra-curricular club and the person who accused me assumed I was a drunk driver and has reported me. I would never drink and drive or endanger my daughter or the public.


#5

Wow I can understand why you would be mad and upset; is difficult defending yourself when people just assume you’re under the influence and they never think that there might be other issues going on.


#6

Thanks very much John. Yes very frustrating and also anxiety-creating. I cannot bear to think of people thinking badly of me, and can’t get this particular incident out of my head. I wish I could tell her not be such an interfering busybody in future but realise that wouldn’t be very charitable. In all likelihood she was only doing what she thought was right. Just another peril of having an invisible disability I guess.


#7

Thanks for your support Mike. I agree that people don’t think sometimes. Its very annoying but what can we do?


#8

Lulu,

I get that this was embarrassing and potentially very difficult if it was reported to the police but you’re not alone by any means. Your story reminded me of a news article I read some time ago but the lady concerned has become so used to it, she laughs it off and has made it part of her comedy act, I think.

So… I realise your incident hurt you and concerned you (and this feels at odds with that) but you’re definitely not alone and I hope you might enjoy this: Laughing at Life’s Challenges

Lots of love,

Richard


#9

Yep pulled over on New Year’s Day back in 2012. Cop pulled me over heading back home after being at a friends house at 1A.M. He asked had I been drinking and I wasn’t. Told him why I don’t drink much because it could cause a seizure. He then tells me to stand on one leg and then the other. Problem I have is my right leg isn’t as balanced as my left is because of the AVM rupture. So little bit of jumping on one leg. He then says if I can say my ABC backwards he won’t have the breathalyzer test. Funny part is I do no them backwards. I can thank my Neurologist for that. So aces with that and he let me pass.


#10

Thanks for sharing John. Nice that you have a party trick and that it saved you a lot of hassle.

Lulu :slight_smile:


#11

Thanks a lot Richard. Really good to know I’m no alone.


#12

Story of my life. I joke I have an 8 beer handicap. For the first 8, you can’t tell a difference. Slurred speech. Lack of balance. Double vision. People have joked along with me. People have become concerned seeing me stumbling across the parking lot. I suppose it helps that half my face is paralyzed. I’ve got no solutions but can say I understand.


#14

LOL! I’m a recovering alcoholic. My regular AA group gets a kick out of my SOBER stagger! My first neurologist suggested a medical alert pendant, which I had already thought of mainly because of my history with alcohol.
That way if I can’t speak for myself or act drunk and need help I’m more likely to get it.


#15

I was never accused, but I was embarrassed at times because of how it must look. It often happened that when I was walking alongside the street, if a car was coming towards me, my balanced seemed at its worst. I remember thinking that they must think I’m a drunk, stumbling his way home. When I was using a walker, I had an explanation of sorts that everyone could see. When I got rid of the walker, that visible explanation was gone, and I had to go through the embarrassment of being unbalanced. My talking was even more painful at times. Even today, especially when I’m tired, my speech gets that slurred tone. There are no answers: it’s just the way I am. We are alive and we made it! That still doesn’t take away from the humiliation of being accused of being drunk, and I am angry on your behalf that you have to endure this experience.


#16

Thanks so much multistats. Well the good news is that I have received an (online) apology from the headquarters of the association concerned. They were very understanding and seemed mortified that one of their leaders had jumped to completely the wrong conclusion. However by this time I had already had a visit from the police and been reported to Social Services. It drives me mad that if I walked with a stick or used a wheelchair no one would dream of accusing me. But I have been advised by Occupational Therapists not to do so lest I should become dependent of them. It has knocked my confidence a bit but there is nothing to do but carry on regardless I guess. Thanks again.

Lulu


#17

Gosh! Well I’m glad they apologised. I’m sorry you went through so much!

Maybe an elegant medical wristband (mine is anything but elegant) would be the right thing to have to hand.

That’s pretty awful you went through all that. Not a laughing matter.

Very best wishes always,

Richard


#18

Thanks a lot Richard. I do already wear a wristband but unfortunately was not quick thinking enough to point it out. Doh!

Cheers
Lulu


#19

Just out of curiosity, what diagnosis or condition would you list on the wristband?


#20

On mine, I give a mixture of i.d., technical info and some very obvious information for anyone who finds me in the street. So mine says

name, health i.d., care of QMC Nottingham, has an embolized dural arteriovenous fistula, right occipital. If symptoms of seizure or stroke, dial 999. Next of kin Tel…

Obviously, depending on the space you have, you can put as much or as little as you prefer. And I was thinking that while Lulu’s wristband might not say anything about balance or walking, the ability to say “I’ve got a condition that affects my balance. It’s called an AVM. Look.” might just help sway the argument enough.


#21

Yes you might well be right. Space is severely restricted on my wristband and it doesn’t help that I have more than one issue. So it just says ‘name, brain AVM, hydrocephalus. vancomycin allergy, ICE xxx’. I used to name my hospital and consultant but when he retired it meant I had to change my wristband.