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Ataxia Support

How do you explain ataxia to people?

#41

People in my family, including myself, have always said it’s like being drunk without the euphoria. That description does not work when you are talking to Mormons. :confused: They often don’t even have experiences AROUND drunk people.

You could also say it’s similar to being awake for a few days straight.

Both things compromise your cerebellum.

I’ve found that when comparing it to ALS or Parkinson’s, most people don’t appear to have ever taken the time to imagine what those conditions might feel like, or how they would impair ones fuction.

#42

They only know what they know!

#43

I say something similar and also usually say, “It’s like MS” since most people have an idea of what MS is.

#44

I had a bad anesthesia reaction too but hadn’t connected it with my ataxia. I was in a brain fog for about a week after and couldn’t move properly. After the surgery, I couldn’t move my legs at all. It should have been a day procedure but I had to stay over until I could walk again…They had to pick me up by the sheets to move me from the op bed to the overnight bed and I had to use the bed pan…blech! Was that similar to what happened to you or was it more dramatic? Mine improved after a week but it has been episodic ever since then, now happening almost every day.

#45

Good morning JVherenow,

Anesthesia is definitely not our brain’s friend. I’m sure we are each different in response as we’ve sustained different events, injuries, and so on in our lives.

One key for me was learning a simple exercise for my brain to know where my extremities are. If you’re interested, I can write it out for you.

With what we face on a daily basis, in my opinion, it’s important to give ourselves a good bit of grace. It takes time to recover from anesthesia brain-fog, which doctors are now admitting really does occur. It’s not like having a broken arm—we see the recovery easily. It’s invisible, with visible results … jd

#46

I let people know that if MS and PARKINSONS had a lil baby it would be Ataxia. Seems to help people understand.

#47

Hi gells0, welcome :slightly_smiling_face: Yes, I agree, often there’s is an immediate understanding if you equate Ataxia to a well known Neurological condition. Although we’re all advised to promote awareness whenever we can, circumstances can often dictate which is the most appropriate explanation. :slightly_smiling_face: xB

#48

I think the worst thing about Ataxia as far as I’m concerned is the inability of “healthy” folks not understanding our situation and the coping mechanisms that we must deal with everyday. I keep trying in my head to think of something that will “ring the bell” with them. I doubt they will understand MS and such. I know this is a sick thought but how about if they lost both thumbs and they couldn’t play sports anymore? When they complain about having a bad back at times or something equivalent, I laugh to myself.

I haven’t talked about this to them [my friends] but I would like to. They know that something is really wrong and they’re pretty supportive but they really don’t understand. They think because I can’t or don’t want to because I know the difficulty that I’m just being difficult. That hurts!

How do you make people understand? I know it’s hard but any ideas out there?

I’m talking about my friends only BTW.

#49

I have a friend who broke a bone in her foot and complained about how the pain and the cast interfered with her Zumba. I have been there, too, but I was still not very sympathetic! I would do anything just to walk normally, let alone do Zumba.

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#50

Frustrating!..Some folks just don’t understand regardless of what you say. Just the other day a friend said to me “you’re going to get better right?” I wish. I couldn’t believe what I was hearing. I was so frustrated I could find no words. This came from what I considered a fairly intelligent person.

#51

I consider myself so blessed to have friends and family that try to understand and are always aware/considerate of my “limitations”.

#52

Although, when I was first diagnosed, an elderly woman (friend’s grandmother) told me that the only reason I was sick was because I hadn’t accepted Jesus as my Lord and Savior, and that opening my Heart and Soul to Him would “cure” me.
Ahhhhh, elderly ignorance.

#53

My sister’s grandchildren quite a while ago asked why aunty Linda talked funny and walked funny at the time I was embarrassed hadn’t been diagnosed at that stage. Like you said though out of the mouth’s of babes