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Ataxia UK

4,141 members•4,726 posts

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Advice

I’m starting to loose control of my bladder which is a bit embarrassing when you’re having breakfast with the royal family and take a few gob fulls of earl...

I’m starting to loose control of my bladder which is a bit embarrassing when y...

•1 day ago

Cerebellar Ataxia and Dirrhea

I have not posted anything in a while. I have got cerebellar ataxia I get diarrhea at least once a week. Is this normal. Thank you.

I have not posted anything in a while. I have got cerebellar ataxia I get diarr...

•10 days ago

Sca....

does this hospital have anything to do with ataxia? info. https://www.heidelberg-university-hospital.com/

does this hospital have anything to do with ataxia? info. https://www.heidelberg...

•15 days ago

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Good News for SCA27b

Solaxa has announced plans to conduct a phase 3 clinical trial of their drug SLX-100 (repurposed 4-Aminopyridine) for Spinocerebellar ataxia 27B (SCA27B)....

Solaxa has announced plans to conduct a phase 3 clinical trial of their drug...

•15 days ago

AAC 2025 Las Vegas

Have just arrived back to live in the UK after 11 transformative years living in New Zealand via the Annual Ataxia Conference in Las Vegas with the National...

Have just arrived back to live in the UK after 11 transformative years living in...

•17 days ago

unstable

•18 days ago

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Nice Photo

Hope you live this.

Hope you live this.

•21 days ago

hearing issues

Hello looking for some advice please. My partner who has cerebellar ataxia, diagnosed 17 years ago, has started to show some signs of hearing loss….or has she?...

Hello looking for some advice please. My partner who has cerebellar ataxia, diag...

•23 days ago

Photo

This is a nice photo hope you like it

This is a nice photo hope you like it

•26 days ago

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Blind

If I go blind and get a white stick how will i know it’s white? I have never seen the value of a blind dog and how do you know it’s not a XL bully dragging...

If I go blind and get a white stick how will i know it’s white? I have never se...

•27 days ago

Hello Lee

guardsmen Lee How are you doing any improvement with your condition are you any better?

guardsmen Lee How are you doing any improvement with your condition are you any...

•28 days ago

Nerve Pain

Has anybody suffered from nerve pain in the eyes its something that is new to me that it’s the eyes. If i go blind I might be able to keep my PIP and not have...

Has anybody suffered from nerve pain in the eyes its something that is new to me...

•28 days ago

Sca.aa

Does this hospital accept patients from abroad?https://www.uclh.nhs.uk/our-services/find-service/neurology-and-neurosurgery/ataxia-centre

Does this hospital accept patients from abroad?https://www.uclh.nhs.uk/our-servi...

•1 month ago

Sca.aa

What should I do to live in England and live there from now on (until I die). This disease is very, very difficult in Türkiye. You are very lonely.

What should I do to live in England and live there from now on (until I die). Th...

•1 month ago

walker

has anyone got any suggestions for a walker because they all seem to run away from me? has anyone any experience of a Veloped?

has anyone got any suggestions for a walker because they all seem to run away fr...

•1 month ago

reckon I am being ignored, or...

This is a story that goes back over 2 months now and have given up. Its not a medical issue, but is Ataxia related. I had my PIP renewal form (or whatever...

This is a story that goes back over 2 months now and have given up. Its not a me...

•1 month ago

Pamela

I suffer from SCA and the most embarrassing part of my condition is the decline in my speech. I'm waiting to see a Speech Therapist, but might be six feet...

I suffer from SCA and the most embarrassing part of my condition is the decline ...

•1 month ago

Rock steady boxing

Hi everyone, I have multifocal Dystonia and have joined an exercise group mainly advertised for Parkinson Disease called Rock steady boxing. Is anyone else...

Hi everyone, I have multifocal Dystonia and have joined an exercise group main...

•2 months ago

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Nystagmus, Double vision Hereditary CANVAS Ataxia

my condition gets worse every week when I get out of bed , stand up after sitting down my problem starts, with constant vertigo my vision is terrible I...

my condition gets worse every week when I get out of bed , stand up after sittin...

•2 months ago

Brain shrinking

Hi everyone i once read ( cant find thé link now ) that its thé small brain that causes our atakia problems and that small brain is graduation shrinking !...

Hi everyone i once read ( cant find thé link now ) that its thé small brain th...

•2 months ago

Trouble with family

Hi my grown up children are having lots ot trouble understang this antakia in fact i am becoming a nuisance i have fallen and finnished in hospital 3 times...

Hi my grown up children are having lots ot trouble understang this antakia in f...

•2 months ago

Information.

https://ir.biohaven.com/news-releases/news-release-details/biohaven-announces-fda-acceptance-and-priority-review/ Information?

https://ir.biohaven.com/news-releases/news-release-details/biohaven-announces-fd...

•2 months ago

Suitable footwear

Good day all, hope you're all well. I would like to ask a quick question. What kind of footwear ldo you wear please? I'm finding that most of my trainers are...

Good day all, hope you're all well. I would like to ask a quick question. What k...

•2 months ago

Falling out a plane.

Hello everyone, I suffer with Ataxia through having Hereditary Spastic Paraplegia (HSP) and while I'm still mobile enough, I've decided to do a fundraising...

Hello everyone, I suffer with Ataxia through having Hereditary Spastic Parapleg...

•2 months ago

ATAXIA AND NOW DYSAUTONOMIA

Was diagnosed on 2021 with ataxia but just recently with dysautonomia and autonomic neuropathy in feet and hands…one cold hand that freezes fast. Feet are numb...

Was diagnosed on 2021 with ataxia but just recently with dysautonomia and autono...

•2 months ago

Brain fog

Morning everyone, As part of my Ataxia I suffer a lot with brain fog and confusion. Has anyone ever heard or had experience of a product called "Nurosym" that...

Morning everyone, As part of my Ataxia I suffer a lot with brain fog and confus...

•2 months ago

ileostomy.

Have had an ileostomy for nine years, due to cancer. I also have hereditary Ataxia SCA6.

Have had an ileostomy for nine years, due to cancer. I also have hereditary Atax...

•2 months ago

Gettimg worse

In the past, probably more than a year ago, I used to get this forum on a daily basis. Then, inexplicably, it suddenly stopped. Every time after a fall or...

In the past, probably more than a year ago, I used to get this forum on a daily ...

•2 months ago

breathlessness

hello dear Members, my mother has SCA2 and has been living with it for 10 + years. I have noticed a sudden deterioration in her cognition and now for past 2...

hello dear Members, my mother has SCA2 and has been living with it for 10 + year...

•2 months ago

Carpal tunnel

Yesterday I had minor surgery for carpal tunnel which I thought it was a place in France but apparently it has lots of causes but one of them is using a...

Yesterday I had minor surgery for carpal tunnel which I thought it was a place i...

•2 months ago

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