Balance reality

:joy: It took me years to realise I could no longer hop! Not that it’s something I’d do at my age anyway but :wink:

Heel to toe is scary😬

And…standing on my right leg alone …is marginally less precarious than standing on my left…

Basically…if I don’t have both feet grounded…balance is very unstable.

We have a couple of steps to our back and front doors. I use a walking stick but as soon as I lift a foot onto a step I feel unstable. We have considered a ramp (planning ahead) …but I think a hand rail would be more helpful at the moment.

Mais quelques fois les questions suivent une piste profitable et quelques fois il serait mieux de les quitter. Je trouve aussi que rien faire dans le genre et le temps de maintenant est le meilleur solution. J’ai appris français, quand même un peu, après je m’ai trouvé piéger dans ce monde d’ ataxia. Et je suis d’accord sur le chose la plus importante et vivre au temps qui arrive.

Please make your posts in English.

:thinking: For me, coping with ataxia during the earliest stages was very disorientating. I learned not to plan ahead because I never knew if there would be a downturn in symptoms and I’d have to abandon plans.
But now my ataxia (Idiopathic-Sporadic) seems to have become more settled…and although I feel able to plan ahead, for the most part I take it day by day…

I’ve been doing a kickboxing-type class a couple times a week while my kid is doing his martial arts class in the adjoining room.

I have definitely noticed my non-dominant foot is harder to stand on if I am briefly on one foot to kick or whatever. What is really challenging is when I have to do one action-say to punch twice with a right hand, then do some hard buffer action, like a jumping jack, and then do something with the left FOOT, like a kick. I do not notice the other people having as much trouble doing this as I am. Even the new people do not seem to get awkward with their body like I do. So it’s switching sides, but also switching from hand to foot.

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:thinking: I’m also a member of Facebook Ataxia Support Groups…and have seen posts from people saying one side of their body is more affected, or stronger than the other. It does seem to be an ‘ataxia thing’

I’m right-handed…and feel stronger on my right side. I’ve tried using a walking stick in my left hand, but don’t feel safe…

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We also have two steps in the front and back. We put a sturdy railing - made a world of difference!


I have to hold on…always! I need to sit down to get dressed no matter what! If I pick a foot off of the ground, I’d better be holding on! I’m scheduled to see a new neurologist in March. I’m a little concerned because he’ll want me to have another MRI.

:thinking: Does your specific diagnosis require regular MRI’s

:thinking: Maybe the Neurologist requires this because you’re a new patient

No, but with the first two I had, two different neurologists told me I had MSA and would die. A balance specialist told me they were wrong and diagnosed me with Ataxia. But the damage is done! I feel like I have PTSD! I cry whenever I talk about it!

:pensive: An incorrect diagnosis is unfortunately par for the course when Neurological symptoms are involved. Sometimes it just isn’t possible to have appropriate testing …sometimes symptoms suggest variable conditions.

I was told I had Epilepsy…it was devastating, and took almost 15yrs to get the diagnosis changed to Idiopathic Cerebellar Ataxia.

And I was misdiagnosed with MS.