Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,032 members • 4,570 posts

All posts for February 2020

A new online community for 2 specific rare diseases

New online community for SCA14 and SPG7 RareConnect is a place where rare disease patients can connect with others globally and share trusted information...

New online community for SCA14 and SPG7 RareConnect is a place where rare dise...

•4 years ago

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Are you diagnosed with MSA (Multiple System Atrophy)

MSA trial into dizziness relief treatment seeks participants Do you suffer from dizziness, light-headedness and feeling faint? The SEQUOIA Study is a...

MSA trial into dizziness relief treatment seeks participants Do you suffer fro...

•4 years ago

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Are you diagnosed with DRPLA (Dentatorubral-pallidoluysian atrophy)

Exciting new project aims to advance research into DRPLA Ataxia UK has started working in collaboration with the Foundation CureDRPLA to advance research...

Exciting new project aims to advance research into DRPLA Ataxia UK has started...

•4 years ago

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EU study on ataxia

I am one of the patients in this study. I saw the neurolgist today who said my gym is definitely helping. I passed all the tests, in fact did very well, my...

I am one of the patients in this study. I saw the neurolgist today who said my g...

•4 years ago

Lego Ramps

🙂 A lady in Germany had the idea of constructing ramps from Lego...this is her story. Please click on the link, then click on the redirect....

🙂 A lady in Germany had the idea of constructing ramps from Lego...this is her ...

•4 years ago

Bath question

My young adult son has ataxia, he is wobbly on his feet. We are doing up our bathroom and I am wondering whether to have bath with handles or without. What...

My young adult son has ataxia, he is wobbly on his feet. We are doing up our bat...

•4 years ago

What to eat in Ataxia

I am suffering from SCA and i dont know much about it, the last thing i know is goto Rehab centre.Mostly the online websites helps alot in increasing...

I am suffering from SCA and i dont know much about it, the last thing i know is ...

•4 years ago

‘It’s everyone’s journey’

https://www.transport-network.co.uk/Govt-launches-empathy-campaign-to-help-disabled-passengers-journeys/16473 🙂 please click on the link, and then click on...

https://www.transport-network.co.uk/Govt-launches-empathy-campaign-to-help-disab...

•4 years ago

What kind of stick?

Can anyone give advice on what kind of walking stick to try? I have SCA and I’m pretty wobbly but walk unaided but for my kid’s buggy :) I’ve sprained my foot...

Can anyone give advice on what kind of walking stick to try? I have SCA and I’m ...

•4 years ago

Group....

I have been attending a GROUP in Havering for a few months now and find it very sociable and love going there,I would like to invite anyone else in the...

I have been attending a GROUP in Havering for a few months now and find it very ...

•4 years ago

Muscle cramps

Takee calcium magnesium with vitamin D3 had bad cramps pretty much gone

Takee calcium magnesium with vitamin D3 had bad cramps pretty much gone

•4 years ago

Anyone use a manual treadmill?

Hi, With all the wet and windy weather we are having, I am finding it impossible to get outside to walk. My walking is getting worse anyway and I find any...

Hi, With all the wet and windy weather we are having, I am finding it impossible...

•4 years ago

Balance issues

My husband has Cerebellum Ataxia. His balance is very poor but he pushes himself and you can see how he teeter tothers to maintain his balance. He falls if he...

My husband has Cerebellum Ataxia. His balance is very poor but he pushes himself...

•4 years ago

Muscle cramps, spasms, muscle, leg locks & Baclofen

Hi I’m just wondering if anyone else suffers from muscle cramps, muscle spasms & muscle locks-where it feels like your muscle has locked & you Baclofen daily...

Hi I’m just wondering if anyone else suffers from muscle cramps, muscle spasms &...

•4 years ago

Question

Hi everyone quick question I’ve got SCA2 and am 58. My son thinks he has ataxia, he’s 38. I have a 1in 2 chance of passing ataxia on to him. Will he get the...

Hi everyone quick question I’ve got SCA2 and am 58. My son thinks he has ataxia,...

•4 years ago

Night time leg and back pain

I was wondering if anyone has been prescribed something for numbness and or tingling and or burning in the legs and back. The pain increases during the night...

I was wondering if anyone has been prescribed something for numbness and or ting...

•4 years ago

Deal For Science

Wellcome Trust have launched the #DealForScience petition recently, which is campaigning for a deal between the UK and EU in order to allow for free sharing of...

Wellcome Trust have launched the #DealForScience petition recently, which is cam...

•4 years ago

Roy

Hi.i get emails about what people have posted but only part of it when i click on it i get a black box with a lot of http numbers and letters could you let me...

Hi.i get emails about what people have posted but only part of it when i click o...

•4 years ago

Disabled living aids.

🙂 please log onto www.disabledliving.co.uk for further info. Welcome to Disabled Living's Supplier Directory The Directory has been created at the request of...

🙂 please log onto www.disabledliving.co.uk for further info. Welcome to Disable...

•4 years ago

Our ‘control box’

Mental well-being, and focusing on things within your control.

Mental well-being, and focusing on things within your control.

•4 years ago

Explaining Sensory Ataxia

🙂 Click on the link, and click on the redirect....

🙂 Click on the link, and click on the redirect....

•4 years ago

Blocked member

Dear all The admins of this forum have recently been made aware of an incident where a member ‘Sunvox’ sent a Private Message (PM) to member ‘Wobblybee’, in...

Dear all The admins of this forum have recently been made aware of an incident...

Partner•4 years ago

Another study supporting Niagen for Ataxia.

Nicotinamide Pathway-Dependent Sirt1 Activation Restores Calcium Homeostasis to Achieve Neuro- protection in Spinocerebellar Ataxia Type 7...

Nicotinamide Pathway-Dependent Sirt1 Activation Restores Calcium Homeostasis to ...

•4 years ago

Prisms for diplopia

I have had double vision corrected with prisms for 10 years. Now that my prisms are stronger and thicker it has been difficult to achieve the correction...

I have had double vision corrected with prisms for 10 years. Now that my prisms ...

•4 years ago

Guanabenz for Ataxia: Caution, conspiracy theory ahead.

EDIT: Cliff Notes version of my post. Guanabenz cured SCA3 in worms. Guanabenz is an FDA approved medicine used to treat high blood pressure. - - So a few...

EDIT: Cliff Notes version of my post. Guanabenz cured SCA3 in worms. Guanabenz ...

•4 years ago

Update from feeling fed up

Firstly thank you everyone for your understanding of how I was feeling last week. This site is so wonderful. I was thinking shall I call the pychologue or...

Firstly thank you everyone for your understanding of how I was feeling last week...

ww-wibblywobbly

•4 years ago

Research participants requiredd

CONCORD (Coordinated Care of Rare Diseases) is a research study which looks at how care of people with rare diseases is coordinated in the UK and how patients,...

CONCORD (Coordinated Care of Rare Diseases) is a research study which looks at h...

Partner•4 years ago

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West of Scotland Ataxia folk

We have started a group for the youngish folk in our area. It is to support, inform and help build friendships. I am 32 with Friedreichs and don’t know many...

We have started a group for the youngish folk in our area. It is to support, inf...

•4 years ago

Retirement

Hi Well I've finally done in, I handed my notice in, am taking early retirement at 58. I was diagnosed with Ataxia about 12 years ago. I had 2 boys and didn't...

Hi Well I've finally done in, I handed my notice in, am taking early retirement...

•4 years ago

Huntington?

A second neurological specialist says I'm no ataxia case. Tomorrow I have a few biopsies for Huntington. Normal healthy people have a genetic ranch of 26.Ill...

A second neurological specialist says I'm no ataxia case. Tomorrow I have a few ...

•4 years ago

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