Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,090 members•4,663 posts

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Advice with managing pain

I’ve picked up a lot of tips and advice from you lovely people in this community and am hoping for some on this subject. My husband was initially diagnosed (...

I’ve picked up a lot of tips and advice from you lovely people in this community...

•10 hours ago

International Day of Disabled People is on 3 December.

International Day of Disabled People is on 3 December. I have Friedreich’s ataxia and I am one of the one in four people in the UK who are disabled. But who...

International Day of Disabled People is on 3 December. I have Friedreich’s ata...

•4 days ago

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Headaches

Do others suffer with bad tension headaches?Sometimes brought on by eyeglasses wear?

Do others suffer with bad tension headaches?Sometimes brought on by eyeglasses w...

•4 days ago

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Special day

Respect today to our past and present military personnel. You can checkout but you NEVER leave. Have a good day.

Respect today to our past and present military personnel. You can checkout but ...

•9 days ago

CANVAS

Evening anyone with Canvas n ear Morecambe? Best wishes

Evening anyone with Canvas n ear Morecambe? Best wishes

•17 days ago

My body clock has gone upside down

Luckily i am retired so i can sleep in thé day ! I go to bed sleep very easily then wide awake at 2 am 3 am i get up have à Coffee like its thé morning end up...

Luckily i am retired so i can sleep in thé day ! I go to bed sleep very easily t...

•20 days ago

Difficulties with rollator

Hi I have recently bought a rollator and find that I hit the rear wheels with my feet because I have a wide gait. Does anyone have any tips or tricks, or...

Hi I have recently bought a rollator and find that I hit the rear wheels with m...

•22 days ago

mini strokes

Hi I haven’t posted for a while but I need to let off steam. I had an mri 8.8.23 and didn’t get any results back until I wrote and asked for them in Jan 24. I...

Hi I haven’t posted for a while but I need to let off steam. I had an mri 8.8.23...

•1 month ago

Sca...

https://www.uclh.nhs.uk/our-services/our-hospitals/national-hospital-neurology-and-neurosurgery Does anyone know if this hospital treats patients coming from...

https://www.uclh.nhs.uk/our-services/our-hospitals/national-hospital-neurology-a...

•1 month ago

Irritable

I find i loose patiance and get agressive anyone else expérience this i blow my top realy quickly Its worrying especialy for my friends and family

I find i loose patiance and get agressive anyone else expérience this i blow my...

•1 month ago

Vouchers

What do you all about the government looking into changing PIP for a voucher scheme ? Great idea I think I’ll make sure I get a voucher for something useful...

What do you all about the government looking into changing PIP for a voucher sch...

•1 month ago

Hacking food prep - good days and bad days - advice please?

What I mean is, in terms of preparing fresh food e.g. peeling and chopping potatoes, carrots, cutting broccoli, courgette, etc are there any 'hacks' you use so...

What I mean is, in terms of preparing fresh food e.g. peeling and chopping potat...

•2 months ago

‘Access Card’

🙂Yesterday…I heard about ‘Access Card’ Someone at my local group (UK) has one and says it makes a substantial difference when being ‘out and about’ if you...

🙂Yesterday…I heard about ‘Access Card’ Someone at my local group (UK) has one ...

•2 months ago

What do you think of neuroplastivity?

Hi i ve never heard of neuroplastivity

Hi i ve never heard of neuroplastivity

•2 months ago

you gotta laugh!

In spite of all of our medical problems, you’ve gotta laugh! I renewed my car insurance this morning, as I was about to ring off, the lady asked me if I had...

In spite of all of our medical problems, you’ve gotta laugh! I renewed my car ...

•2 months ago

Sca ...

I agree with the site.Then he comes out. information.

I agree with the site.Then he comes out. information.

•2 months ago

Personailty

Hello all, I've been recently diagnosed with HSPG7. As well as all the physical symptoms has anyone had a change to a bit of their personality. I'm definitely...

Hello all, I've been recently diagnosed with HSPG7. As well as all the physical...

•2 months ago

News....

https://ir.biohaven.com/news-releases/news-release-details/biohaven-achieves-positive-topline-results-pivotal-study

https://ir.biohaven.com/news-releases/news-release-details/biohaven-achieves-pos...

•2 months ago

Tea stained teeth

Does anybody else suffer with badly stained front teeth? I have only noticed this during the last 6 months. I love my tea but now I'm paranoid especially...

Does anybody else suffer with badly stained front teeth? I have only noticed thi...

•2 months ago

Explanation

Hi Can someone tell me if a person has been tested for ataxia and it’s positive , can it totally miss a generation without affecting anyone in that generation...

Hi Can someone tell me if a person has been tested for ataxia and it’s positive...

•2 months ago

New member

Hi everybody, I am a new member and a suffer from RFC1CANVAS. I their are any RFC1 suffers out there and want to talk about this subject, I would welcome any...

Hi everybody, I am a new member and a suffer from RFC1CANVAS. I their are any ...

•3 months ago

Nutrition advice

Hello everyone, I'm a 50 year old male and have recently been diagnosed with Ataxia due to hereditary SPG7. Has anyone got any advice about what I should eat...

Hello everyone, I'm a 50 year old male and have recently been diagnosed with A...

•3 months ago

For anybody still Idiopathic

In 2023, the gene that causes a type of late-onset spinocerebellar ataxia called SCA27B was discovered. Since then, researchers have been developing a genetic...

In 2023, the gene that causes a type of late-onset spinocerebellar ataxia called...

•3 months ago

wheelchair

hi, that’s me back to using a wheelchair. I have been trying to a void the wheelchair for a while. But my ataxia is getting the better of me.

hi, that’s me back to using a wheelchair. I have been trying to a void the wheel...

•3 months ago

A Webinair discussing the potential of Gene Therapy as treatment for Ataxia.

🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on Gene Therapy. In this session, Dr. Carolyn Yrigollen will teach us what gene...

🙂 UK TIME…..7.30PM Join NAF on August 22nd at 1:30 pm CDT for our webinar on...

•3 months ago

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For Parents of Children with Ataxia

🙂If you are a Parent of a child diagnosed with ataxia…this is an opportunity to join a Webinair with a Specialist Paediatric Neurologist. UK TIME ……..7PM...

🙂If you are a Parent of a child diagnosed with ataxia…this is an opportunity to...

•3 months ago

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Covid and Ataxia

I have SCA6 and recently tested positive for Covid. I have none of the usual Covid symptoms but my Ataxia symptoms are much worse. Impossibly dizzy,...

I have SCA6 and recently tested positive for Covid. I have none of the usual Co...

•3 months ago

Genetics results: Anyone with AOA4 in UK?

Hi, After many years without a diagnosis, I finally got Whole Gene Sequencing done myself (with Nebula Genomics). In my data I screened ~1300+ neurology genes,...

Hi, After many years without a diagnosis, I finally got Whole Gene Sequencing do...

•3 months ago

my Ataxia

I was recently chatting with my elder Brother about Ataxia….. he told me that I was born with body tremors, but as far as I know, it was never investigated. I...

I was recently chatting with my elder Brother about Ataxia….. he told me that I ...

•3 months ago

Dealing with minor Speech issues.

🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frustrating. If this becomes a real problem we’re generally referred to a Speech...

🙂 Many of us have noticed changes in our Speech…it can be embarrassing and frus...

•3 months ago

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