You can get a good card from Ataxia UK to say our condition means we look drunk but aren't.I carry mine around with me but haven't had to use it yet.
I don't suggest doing this but.......
One day, I had had "enough" of this one person watching me like I was some sort of freak and about to fall down drunk, so I just walked up to them and said " I know I look bad, but I'm not drunk, my brain is dying"... Pretty much got a look of total shock, then I walked off laughing my head off silently to myself.
I don't mind flat out telling people I have ataxia. I don't mind using my cane or walker whenever I need it. I watched my dad be all proud and chit and refusing to stop driving ... I am not going to do that or be that way.
I personally don't like falling, and I never know when I will so if I leave the yard, I have either a cane or walker with me. I'm getting older ( I'm 46) and personally? I don't want a broke hip or arm or hand, or a busted open head.. If people want to look at me funny, or with "pity"... so what !?! They are the ones with that problem, not me!
Yes this does suck! Last night I had to go to the High School for orientation for my son. I didnt bring a cane so I was wobbling all over.(my fault) I was in the hallway with hundreds of people. (Bad news)lol. The principle of the new school was looking at me funny. (Everyone knows the look) I walked up to the principle and told him to look up the word ataxia. And then I want an apology! Looking drunk has really brought me some bad things. So it is very hard for me to be positive. Something to work on!
Is there like a necklace for ataxia if there’s not there should be.
And I don’t live in uk so I can’t get an ataxia card.
I have a letter from my doctor about the ataxia. That I carry with me. Or we have that medic jewelery that we can order.
Have your neurologist write on the back of one of his/her cards that you have ataxia and your symptoms. I don't live in the UK either, but that's what I carry in my wallet. In terms of using a cane, I don't care what anyone thinks, as I'd rather be safe than sorry when I'm out and about! Although when I'm home I don't use it, and I hairline fractured my pelvis when I fell in my kitchen in November. I also fell in my family room in January and hit my noggin on the corner of the wall. I sported quite a bump on the back of my head for a few weeks! Anyway, I've been extra, extra careful these days! People I don't know have been very kind holding doors open for me when I'm out. I even had a man (who was talking on his cell) ask if he could open my car door for me, as I hand my cane in my right hand and a package in my left. I appreciated his help! ;o)
I’m curious why you don’t use your cane at home? I’ve found it helps with. My fatigue level as well as tipping over(falling). I was really surprised how much it helped with my fatigue levels.
Yes Julie, I should! I started using it when I leave home a couple years ago, as I fell and really injured my back. Since I started using it, I haven't fallen again when I'm out and about. Not so much at home though, as I've had my share of falls. You'd think I would have started using it in my home by now, especially after I hairline fractured my pelvis...,duh!!! That's good to know that it helps with fatigue! ;o)
yes i agree it s___s! i was diagnosed with hereditary cerebella ataxia type 2. i have been accused of being high or tipsy and it hurts. focus on keeping yourself as flexible as you can. as the body gets older it gets stiffer. i would suggest water therapy. the heck with them non ataxics, focus on yourself. if yoou ever need to vent, i'm here and so are a lot of us.