Questions or comments?

I haven’t seen new questions or comments here for awhile. How are you coping with the challenges of Ataxia? What advice do you have for new members? What do you want to share? Thanks.


:thinking:Personally…I suspect most people just ‘get on with it’…and only post if something new crops up and they’d like to know if anybody else experiences the symptom.

:slightly_smiling_face: But for newcomers…help and information is always available.


Well things seem to be changing for me. After a few weeks of sharp stabbing pains around my body I had an MRI scan on my back. I have a repeat of this plus a CT scan next week.
Seems to be pointing to Pagets Disease which can also affect balance. Oh well just another problem , I don’t think it is anything to do with my Ataxia? Hope everyone else is coping. It’s just a case of Carry on Regardless. Best wishes to all


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Many thanks for the update Issy. Just know we all want the best for you.

Pagets Disease…involves bone structure, so it seems logical that it may affect balance re your legs.

:face_with_diagonal_mouth: I’m so sorry…have you been given any specific therapy etc?

Hello Beryl
Not yet, the scans to verify results are on Monday and judging by how long it took to get last results - over 2 months!
I might not hear for a while . At least I have appointment with my Neurolgist next week and she will have first results . No pains in legs though , just a constant dull ache in my spine :upside_down_face:

:face_with_diagonal_mouth:Waiting to get results needs an indefinite supply of patience :wink: But …at least your Neurologist appointment is imminent and you can ask questions.

I know I have arthritis…but I sometimes wonder if most of the pain I experience is linked to that🤔

:slightly_smiling_face: Keep us posted…

Pain is a four letter word that I’m very familiar with. I have constant pain on my right side when I move. Goes from my knee to my sacroiliac. Before my Ataxia got to the point where it is now, I used to be a mailman. One day while delivering the mail, the steps collapsed at this house with me falling. I got three herniated discs from that event. And now arthritis is showing its ugly face. As if Ataxia isn’t enough. Gimme a break! :rage:

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:no_mouth: Incurring an injury carrying out your job is awful…were you able to claim compensation?

Yes. I receive a small injury retirement pay but I would give it up in a minute.

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:face_with_diagonal_mouth: I can well understand

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Not good… I wish you well. X

Good point Chas. I’m 81 in November so struggling with Ataxia meets old age.
The best information given to me was from neurophysio. That was to understand the difference between holding onto for instance, a sturdy piece of furniture or someone’s arm. The message from cerebellum to neuro muscular system is very different. Sometimes just touchingna wall can enable balance. I wish that had been explained to me 20 years ago. Take care and stay safe and don’t forget to smile x


Good point Patsy🙂

I have a rollator, but generally use a walking stick if outdoors.

:slightly_smiling_face: I notice…I have better stability, feel safer and can actually move faster, if I link arms with my husband…a ‘solid object’.

:thinking:I used to have the same confidence using my rollator, or a supermarket trolley…but not now. I suspect this is because these aren’t ‘solid-stable’….I can sense movement.


Yes, all husbands arent solid ha! X

Walking speed (movement) affects my balance. If I move too slowly my balance is affected more. Same with moving too fast. I have a friend (healthy) who walks slower when walking with me and that doesn’t work with my balance. But he’s only trying to work with me so I accept it even though his speed is not for me. What I’m saying is that I need to kinda walk by myself at my own speed if that makes sense.

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:thinking: Similar for me…
Young children learning to walk rush …just to stay upright.


I had appointment with my neurologist. When I mentioned the very sharp nerve like pains I had around my middle for 3 weeks which no doctors could explain - she came up with the same thing I had wondered about. Shingles! with no rash and despite having had the vaccination. It’s so reassuring when you get a reason when things go wrong, no problems with that now. I am lucky in that my Ataxia only affects my balance, speech and eyes not affected.
Just got to wait for results of scans regarding possible Paget’s Disease. Balance problems and painful bones no fun.
Take care all. :hugs:

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:slightly_smiling_face: A couple of years ago…I had the Flu jab and it included ‘shingles’.

I hope it clears asap🙂

:crossed_fingers:re Pagets

Many thanks Beryl.
No problem with that now - it was quite frightening for 3 weeks, not knowing was the problem was. I spent a day in A and E with no satisfactory outcome . Take care :slightly_smiling_face:

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