A bit wobbly !

[DesRay57]

Having this week gone to my Neurologist who unfortunately is not an Ataxia specialist asked if I was still a bit wobbly. With he not having this disease he should not use this terminology. Wobbly describes an infant trying to roller- skate, not someone on some days finding it difficult to walk, taking into account their are different severity of Ataxia.

[Floramac]

I think that ataxia can be a difficult condition to describe sometimes , I don't think that they meant to belittle your symptoms by saying wobbly. I often say I am feeling wobbly and people seem to understand that xx

[Iain_100]

A few words is all it takes. And it feels even worse coming from someone that we expect to know better. So.... "frustrating" (I'd love to swear here - but internet forums are not the place for such colourful language). I share your annoyance.

But I'm with Floramac on this. I don't think that most people are trying to belittle your symptoms, or the impact that they have. People just find it really hard to understand how ataxia affects you. Sometimes, I find it hard to explain it to them!

Strangely, it's the other 2 words in that phrase which annoy me more.

"A bit"!

There's no "a bit" about it. "A bit" sounds like it is trivial. That it will pass. Like, on another day, you'll be OK.

"Wobbly" does sound rather juvenile though. Like a stage that you will grow out of.

But it's also a bit of a humorous word. And humour always helps when trying to explain something that is actually quite serious.

Humour makes it easier for some people to talk to you about your ataxia.

And talking is good

[LOVELY_1]

I agree " Wobbly" is not very professional term to be used by a neurologist.

At the specialist Ataxia Clinic I go to, they have a way of accessing your syptoms against a rating scale. If your neuroligist is not using it you may want to ask that it is used, so your symptoms can be monitored over time in a consistent fashion. The scale is called the SARA scale. Here is a link to this scale:-

ataxia-study-group.net/html...

Good luck!

[neta]

Seriously, who cares? I think he/she was trying to be "gentle" with his/her wording.

Dont be insulted or hurt. What's better? "Shake y?" "unstable"? "graspy"? "strange?" "

cock-eyed"?.

The main thing: feel good. N

[TedTom]

What word/s would you have found acceptable? Do you never use the word wobbly yourself? Would love to know what Wobbleybee' s opinion on this.

[cymruralf]

I have always used the word wobbly. My wife knows exactly what I mean when she asks in the morning how am I. Don't get upset or annoyed by the term Wobbly sometimes it is easier to explain it that way than go into a complicated explanation about how you are.

[oniki44]

DesRay57, don't let it get you down. I agree with Iain_100 that the 'a bit' would have annoyed me a lot more. How about this for ignorance? Saw my GP a few weeks ago and was greeted with "Have you been drinking?" I was so stunned that I could not think of an immediate response, but threw imaginary daggers at her. When she realised who I was, she said "Uh, uh, uh, have you been drinking enough water?" Was not amused at the time, but now I think it is so funny...... If something or someone annoys me, I say to myself "Let go, let go" - Works most of the time, once the initial shock has passed. Take care. Oniki x

[february]

Dear DesRay57, I consider myself to be "wobbly" with my ataxia, as people understand that better then my "balance is compromised". I agree with what other's have said, as I don't think your doctor mean't it in a hurtful way! My best to you..., ;o)

[PGee]

I have a hearing impediment (as well as Ataxia) and the problem is sometimes, how to speak to the audiologist, about the settings to put the hearing aid to, when I as a layman (hmmm) lay-woman, I speak to the audiologist in comparisons, since I don't know music speak, or sound system speak to use with them to explain what I can or can't hear. So, they too must find it very frustrating, being told I am hearing sounds (what sounds?) like down a long tube.. (for example).

It depends on how you feel also at the time, of being told you were wobbly. Worried, sad, coping, etc., it will tend to influence your response from day to day.

I get frustrated and have had an absolutely furious bursts of anger, when someone tells me 'I can hear when I want to.'. Utterly speechless with impotent rage.... so I can emphasise. Some times people say things and there is no reaction from me... I was shocked at the strength of my anger as in the incident I mention - and the person totally did not expect my response!

You have to laugh. (after a while you do!) Not very nice at the time and upsetting on several points. If you meet this person again, explain why the use of this word was so upsetting for you and maybe he/she will learn how to handle his/her Ataxia patients... We all have our moments... All the best to you and keep your laughter muscle in tone.