Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,032 members • 4,570 posts

All posts for January 2021

Powered Wheelchairs (Karma Leon or Q300 Mini M Power Chair)

Does anyone use the Karma Leon Power Chair or know anything about that range? I want something really stable that isn’t going to tip me out or fall over! Or...

Does anyone use the Karma Leon Power Chair or know anything about that range? I...

Grapes12

•3 years ago

2 Replies

Covid Vaccine Jab

Receive my letter today, booked my 1st and 2nd jabs online....... book it online and choose your nearest covid jab centre, dates and times convenient for you!...

Receive my letter today, booked my 1st and 2nd jabs online....... book it online...

Veteran250

•3 years ago

11 Replies

Update

Just to let you know, I have contacted my doctors surgery and asked for a referral to the Sheffield ataxia clinic! Fingers crossed!

Just to let you know, I have contacted my doctors surgery and asked for a referr...

Hidden

•3 years ago

3 Replies

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National strategy for disabled survey

Please complete this government survey, we can influence how disabled are treated and legislated for within the UK: https://disabilityunit.citizenspace.com

Please complete this government survey, we can influence how disabled are treate...

majajefferies

•3 years ago

2 Replies

Ataxic Children with SEND??

Hi ya Just wondering for those of you who have children with Ataxia. Do all children have SEND needs??

Hi ya Just wondering for those of you who have children with Ataxia. Do all chil...

gizmo0910

•3 years ago

7 Replies

Where from here?

A sports physio told me I had ataxia- NONE of my doctors at surgery had a clue (and didn’t seem interested once they realised they hadn’t!) I want to...

A sports physio told me I had ataxia- NONE of my doctors at surgery had a clue (...

Hidden

•3 years ago

34 Replies

Parkinsonism or not?

I was diagnosed with SCA over 12 years ago and know that I have SCA 14. After a car accident I started to experience extreme tremors. It took nearly 2 years...

I was diagnosed with SCA over 12 years ago and know that I have SCA 14. After a...

CrazyHarry

•3 years ago

2 Replies

Refused request to be excused jury service

A few days back I received an email from HM Courts and Tribunals Service informing me I've been selected for jury service and a request to complete an form...

A few days back I received an email from HM Courts and Tribunals Service informi...

Poweruser

•3 years ago

4 Replies

TYPES OF ATAXIA AND SYMPTOM TABLE

Scroll down until you see the table that shows known types of ataxia listed and some causes. https://www.scielo.br/pdf/anp/v72n3/0004-282X-anp-72-03-232.pdf...

Scroll down until you see the table that shows known types of ataxia listed and ...

rideabike

•3 years ago

3 Replies

Charity raffle for Ataxia research

Hello friends, I am organising a charity raffle to raise funds for Ataxia research. The prize is a beautiful hat that I made, feel free to take part or share!...

Hello friends, I am organising a charity raffle to raise funds for Ataxia resear...

Larobby

•3 years ago

2 Replies

Steriods

I have been on steroids for my ataxia for 4 days what is it good for.

Jools15755

•3 years ago

4 Replies

Does anyone else suffer from this strange sensation

Every so often I feel like I have electricity rushing around my body. Not like electric shocks or painful, but sort of like a current rushing around my body....

Every so often I feel like I have electricity rushing around my body. Not like ...

ww-wibblywobbly

•3 years ago

27 Replies

Research news from AtaxiaUK 2020

https://www.ataxia.org.uk/ataxia-research/research-news/?fbclid=IwAR1ZgRV19M8XPX_Z-qXi-Th_clkzhKdVijtLah8KL8MBEydgp73lePOSoFc

https://www.ataxia.org.uk/ataxia-research/research-news/?fbclid=IwAR1ZgRV19M8XPX...

wobblybee

•3 years ago

Be the first to reply

Updated Contact Details for the Ataxia UK office-18.01.2021

Dear all Please see the below message from Ataxia UK's CEO, Sue Millman- 'We have all been in lockdown for a long time now and understand how challenging it...

Dear all Please see the below message from Ataxia UK's CEO, Sue Millman- 'We ha...

HarryB

Administrator•3 years ago

Be the first to reply

Life as I know it..

It’s an ataxia thing..

wobblybee

•3 years ago

6 Replies

Neurologist appointment

Neurologist appointment I have an appointment with my neurologist at the end of January. It will take approximately 40mins. to get there,a30min wait to see a...

Neurologist appointment I have an appointment with my neurologist at the end of...

Don21

•3 years ago

32 Replies

URGENT Omaveloxolone campaign 45,000 signatures so far!!! - PLEASE SUPPORT - Petition closes 20th Jan

You may have seen HarryB's post below. Ataxia UK is supporting the campaign initiated by FARA to press Reata Pharmaceuticals and the US Federal Drugs Agency...

You may have seen HarryB's post below. Ataxia UK is supporting the campaign ini...

SueMillman

Partner•3 years ago

1 Reply

Don the veteran

Does anyone know what has happened to Don, it's been a long time since he's posted and I miss his jokes and positiveness?

Does anyone know what has happened to Don, it's been a long time since he's post...

ww-wibblywobbly

•3 years ago

9 Replies

New Covid information from ataxia uk & unpaid carers

Good afternoon all. I’m just wondering if anyone knows how unpaid carers & receiving the Covid vaccine works. My husband is my main carer but still works...

Good afternoon all. I’m just wondering if anyone knows how unpaid carers & rec...

Legs-alive

•3 years ago

15 Replies

Omaveloxolone and FARA's campaign-Ataxia UK's position

Dear all Please find below a statement from Ataxia UK regarding their position towards Omaveloxolone and FARA's campaign- FARA has launched a campaign asking...

Dear all Please find below a statement from Ataxia UK regarding their position t...

HarryB

Administrator•3 years ago

2 Replies

Omaveloxolone

I have signed FARA's petition to the FDA for 'access to 0maveloxolone' (for the treatment of Friedeich's Ataxia) and thought to put the address here for...

I have signed FARA's petition to the FDA for 'access to 0maveloxolone' (for the ...

medea

•3 years ago

8 Replies

Melatonin & Cerebellar Ataxia

Does Melatonin have adverse effects on Cerebellar Ataxia since it is supposed to affect those with auto-immune diseases? Before that, is Cerebellar Ataxia an...

Does Melatonin have adverse effects on Cerebellar Ataxia since it is supposed to...

dennisataxia

•3 years ago

4 Replies

The uk Government & Rare Diseases

Interesting read. I wonder if they read the information sent by people to @AtaxiaUk https://www.facebook.com/241395985957742/posts/3445978745499434/?d=n

Interesting read. I wonder if they read the information sent by people to @Ataxi...

Legs-alive

•3 years ago

Be the first to reply

Ataxia Uk Covid information leaflet & GP Practice.

I’d just like to say a huge thank you to ataxia uk for producing the Covid information leaflet. I wrote a short note about my ataxia to my health centre,...

I’d just like to say a huge thank you to ataxia uk for producing the Covid infor...

Legs-alive

•3 years ago

3 Replies

Retuxameb

Hi has anyone had a drug called Retuxameb? I so did it give you any results?

boxerattims

•3 years ago

1 Reply

Reducing spascitity and the pain with it

Firstly happy new year to everyone X For about 2 months I've been doing a little exercise every evening and after about 3 weeks I noticed that my spascitity...

Firstly happy new year to everyone X For about 2 months I've been doing a littl...

ww-wibblywobbly

•3 years ago

3 Replies

sight problems

can you get financial help when you need glasses? Do glasses work if you have nystagma ' s?

can you get financial help when you need glasses? Do glasses work if you have n...

crazycat18

•3 years ago

2 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for January 2021

Powered Wheelchairs (Karma Leon or Q300 Mini M Power Chair)

Covid Vaccine Jab

Update

National strategy for disabled survey

Ataxic Children with SEND??

Where from here?

Parkinsonism or not?

Refused request to be excused jury service

TYPES OF ATAXIA AND SYMPTOM TABLE

Charity raffle for Ataxia research

Steriods

Does anyone else suffer from this strange sensation

Research news from AtaxiaUK 2020

Updated Contact Details for the Ataxia UK office-18.01.2021

Life as I know it..

Neurologist appointment

URGENT Omaveloxolone campaign 45,000 signatures so far!!! - PLEASE SUPPORT - Petition closes 20th Jan

Don the veteran

New Covid information from ataxia uk & unpaid carers

Omaveloxolone and FARA's campaign-Ataxia UK's position

Omaveloxolone

Melatonin & Cerebellar Ataxia

The uk Government & Rare Diseases

Ataxia Uk Covid information leaflet & GP Practice.

Retuxameb

Reducing spascitity and the pain with it

sight problems

Search posts

Latest poll

How long have you or your relative/friend been diagnosed with ataxia?

Topics

Archive