Raising Ataxia Awareness in our personal environment

I’m now spreading Ataxia Awareness around me. I have made a logo (please feel free to use it) and I have posted the following on FaceBook. Hope it helps a bit to create understanding for us all. Clumsiness is a disease and not everybody that looks drunk is a drunk. We are not ashamed of our condition. Anything else I should say?

“Four years ago I was diagnosed with a rare disease: Cerebellar Atrophy and Cerebellar Ataxia as a result. Apparently you slowly loose your Purkinje cells in your cerebellum… This leads to less and less coordination and balance. It affects your gait, enhances your fall risk, impairs your fine hand movements (resulting in dropping things, knocking things over and a terrible handwriting). It also gives you a slurred speech. Basically it does everything to your brain that a lot of alcohol does. And I do not drink! So I am a natural drunk! LOL. This post is not meant to ask for sympathy as I do not feel sorry for myself. I hate that! However, this post is meant to raise Ataxia Awareness. Clumsiness is a disease and not everybody that looks like a drunk is a drunk!”


i was diagnosed in 2015 with CA. now my thing is i want to find someone who got by it using the medication [dilantin]. ive done a lot of research on it.[ as much as i can] meaning theres not that much cause its a rare condition. so far im not too bad yet but cant work. would like to talk to you about CA if you dont mind.


Of course I don’t mind that, Bobby. However, I’m just a beginner here. I’m sure there are others who could help. Is your CA diagnosed as having been induced by Dilantin? Did you get that as an anti-epilepticum? How long did you take it and how long ago did you stop taking it?

i am a epileptic but its minor. its [petemal]. the lowest grade they go. i lived a normal live till i got CA. it was caused but the dilantin. [ its a side affect that only 5 % of people who take dilantin have a chance of getting it. and i happened to be 1 of them.i was on dilantin for 58 years till my neo. got me off of it. got me on new meds.its a slim chance that ill find someone who took dilantin who ended up with CA.is this something new you are starting raising ataxia awareness?


Bobby, I have CA from Dilatin. It’s not such a slim chance you’ll find someone…

so im not alone like i thought. would you mind telling me your story. id be interested to know. ive done as much research as i can on it.


Hey Bobby, I’m so glad you’ve found someone with the same diagnose! I’ve just started arousing Ataxia Awareness in my personal environment and I’ve designed the logo. There are lots of Ataxia Awareness groups. All I am trying to say is that we all should not be ashamed and get our environment familiar with the disease. That’s very easy through social media: FaceBook, Twitter etc. I’ve received a lot of positive reactions on my FaceBook post of people thanking me for the information!

No Bobby, you’re not alone. We already emailed-I was diagnosed with CA from Dilantin use in 2014 . Now I’m about to apply for disability. It’s so important that we support each other. I’m always here, okay?

what kind of disability ?

Spot on, you pretty much nailed it. See you on FaceBook.

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I was diagnosed about 6 months ago. Same thing Cerebellar Atrophy and Cerebellar Ataxia as a result.

EXACTLY…not everybody that looks like a drunk is a drunk!"

I’m not ashamed - more just pissed off…I am, well I was extreme OCD, I am in a wheel chair + the other symptoms (I have them all), it at times becomes very frustrating. If I do not support myself properly, I will smash my face into my keyboard.

People say “If you excercise it will help”…ARGHHHH. I’d like to see them keep up with the excerises I complete daily.

No sympathy, it’s not what we need. Empathy, understanding and support. I like the logo, and I will share it. Thank you.

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