Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,037 members • 4,576 posts

All posts for November 2018

Meeting in East Sussex

Hi we have a group get together this Thursday at 2.00 in Eastbourne. All welcome Anyone interested just give your mobile number or email and I can send...

Hi we have a group get together this Thursday at 2.00 in Eastbourne. All welcome...

•5 years ago

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Suffolk

Hi everyone, is there anyone who lives in Suffolk/Norfolk UK to give each other support.

Hi everyone, is there anyone who lives in Suffolk/Norfolk UK to give each other ...

•5 years ago

Stem Cell Treatment

Hi Has any got any feedback about https://stemcelltreatmentnow.com ? Good or bad?

Hi Has any got any feedback about https://stemcelltreatmentnow.com ? Good or ba...

•5 years ago

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FASTING?!

Hello everyone, I was wondering if any of you have tried fasting? I have been doing some research and listening to some podcasts about the benefits of fasting...

Hello everyone, I was wondering if any of you have tried fasting? I have been d...

•5 years ago

Omaveloxolone versus Sulforaphane. Anti-oxidants as treatment for ataxia.

Reata Pharmaceuticals has a marvelous new drug that reduces oxidative stress and helps cells survive. Initially there was concern the drug did not meet it's...

Reata Pharmaceuticals has a marvelous new drug that reduces oxidative stress and...

•5 years ago

Cramp

After a bad day yesterday things can only get better. I have changed my diet to Gluten Free also I am limiting my dairy intake. This morning I have cramp in my...

After a bad day yesterday things can only get better. I have changed my diet to ...

•5 years ago

Down day

Hi all, I am having a really bad down day today. It all started when I was in the town and I couldn't walk properly. Very tearful hope it passes. I feel I'm...

Hi all, I am having a really bad down day today. It all started when I was in th...

•5 years ago

How to treat ataxia.....

How to improve or treat this condition of ataxia.........or pls suggest some tips for SCA sufferers.......

How to improve or treat this condition of ataxia.........or pls suggest some tip...

•5 years ago

Fredriech's Ataxia confirmed

I just got diagnosed with Fredreich's Ataxia through genetic testing. Finally got answers! Does anyone else have Fredriech's Ataxia? I am 38 but symptoms...

I just got diagnosed with Fredreich's Ataxia through genetic testing. Finally go...

•5 years ago

I’m looking fro information on gene editing

Gene editing SCA

Gene editing SCA

•5 years ago

Nilotinib/Tasigna revisited for treatment of Ataxias.

5 months ago a poster from Korea came on here and mentioned this drug. At the time I did not realize the drug had been tested for patients with Parkinson's so...

5 months ago a poster from Korea came on here and mentioned this drug. At the t...

•5 years ago

From Merseyside?

Is there anyone with wih Friedreich''s Ataxia over 50 in the area, please?

Is there anyone with wih Friedreich''s Ataxia over 50 in the area, please?

•5 years ago

Turning a manual wheelchair into a electric wheelchair

It has come to the time when I need to get a wheelchair for every day use. I have found a manual Ti Lite wheelchair that I love and is really suitable for my...

It has come to the time when I need to get a wheelchair for every day use. I hav...

•5 years ago

Pipeline of ataxia related research.

Found a report online being offered for $2000 that summarizes the current pipeline of all known ataxia related drugs. - - - Spinocerebellar Ataxia (SCA) -...

Found a report online being offered for $2000 that summarizes the current pipeli...

•5 years ago

Daughter feeling down.

Morning all, My daughter is 12 years old, after a change in medication and a couple of throat infections she has become increasingly unsteady on her feet. Her...

Morning all, My daughter is 12 years old, after a change in medication and a cou...

•5 years ago

Legs

Does anyone know if the legs go completely or do they stay wobbly. It's so scary to know I may need help even around the home

Does anyone know if the legs go completely or do they stay wobbly. It's so scary...

•5 years ago

Vatiquinone (EPI-743) a possible treatment for all ataxias.

There was a post on LivingwithAtaxia.org that got me looking at research being done by Dr. Susan Perlman as she is set to be the keynote speaker at the...

There was a post on LivingwithAtaxia.org that got me looking at research be...

•5 years ago

Benefits

Hi all, does anyone know which benefits I can apply for I'm 68

Hi all, does anyone know which benefits I can apply for I'm 68

•5 years ago

After searching for a very long time I have a diagnosis Progressive Spastic Ataxia.

Has anyone been diagnosed with progressive spastic ataxia or similar? Thanks

Has anyone been diagnosed with progressive spastic ataxia or similar? Thanks

•5 years ago

Advice on electric wheelchair

I am thinking of getting an electric wheelchair from a commercial (i.e. non-NHS) supplier. I have been doing research online and I have 2 questions: Is it ok...

I am thinking of getting an electric wheelchair from a commercial (i.e. non-NHS)...

ConantheLibrarian

•5 years ago

Reading easier.

It seems some of us here have reading/seeing difficulties, if you didn't know about this, it might help, it certainly helps me! Remembering and brain fatigue I...

It seems some of us here have reading/seeing difficulties, if you didn't know ab...

•5 years ago

Hope for Cerebella Atrophy sufferers

I was diagnosed three weeks ago, my boyfriend of nearly two years said he couldn't give me the emotional support I needed and went. I now live on my own with...

I was diagnosed three weeks ago, my boyfriend of nearly two years said he couldn...

•5 years ago

My first year with SCA7: Pilates, CBD oil and reading

I'm 29, was diagnosed with ataxia nearly a year ago and am fighting every day. I wanted to share what I am doing to fight this. As soon as I got my diagnosis,...

I'm 29, was diagnosed with ataxia nearly a year ago and am fighting every day. I...

•6 years ago

Tongue twisters

Just wanted to share a resource I use for to practise my speech. It's collection of tongue-twisters, which you listen to and repeat. It's aimed at kids but if...

Just wanted to share a resource I use for to practise my speech. It's collection...

ConantheLibrarian

•6 years ago

Cerebella Atrophy

I have recently been diagnosed with Cerebella Atrophy, I am reaching out for your support.

I have recently been diagnosed with Cerebella Atrophy, I am reaching out for you...

•6 years ago

The elephant in the room. We could end genetically inherited illness in this generation.

The elephant in the room that is not being discussed is the fact that we have the ability in this generation to end transmission of genetically inherited...

The elephant in the room that is not being discussed is the fact that we have th...

•6 years ago

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