Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,032 members • 4,570 posts

All posts for March 2019

Alone

Hello all, I have been very stressed out this week, nothing new about That !!!!, but I have to do something to stop this, for the sake of my Illness, I am...

Hello all, I have been very stressed out this week, nothing new about That !!!!,...

•5 years ago

Blue badge

A friend has mentioned getting a disabled parking badge. If anyone has got one, at what stage we’re your symptoms when you applied? x

A friend has mentioned getting a disabled parking badge. If anyone has got one, ...

•5 years ago

Good Rollator and/or Scooter?

With the mind boggling choice out there and fellow Ataxians on this site, recommendations/make and model and why it’s so good would be helpful.

With the mind boggling choice out there and fellow Ataxians on this site, recomm...

ConfusedAtaxian

•5 years ago

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Supplements

What r some of the vitamins and supplements u r taking. Thanx mom

What r some of the vitamins and supplements u r taking. Thanx mom

•5 years ago

Progression

I'd like to hear about the progression of ur symptoms..what they r and how long till they were seriously limiting ur life.

I'd like to hear about the progression of ur symptoms..what they r and how long...

•5 years ago

Researchers looking closer at protein clearance as the best way to treat SCA now.

This post is technical in nature so I hope the non-technical folk will forgive me. If you are new to this site or to my posts, let me start by saying that I...

This post is technical in nature so I hope the non-technical folk will forgive m...

•5 years ago

Medication

Hi all Apparently some Young Ataxians in South Africa are going to try Etravirine Seems that some get positive results - some don't Anybody know of it

Hi all Apparently some Young Ataxians in South Africa are going to try Etravirin...

•5 years ago

Not wanting to go out --or have company, what is wrong??

Hi all,---- With Ataxia, I really do not know yet what kind I have got, I just got told from my Neurologist that I have ataxia, and should be in a wheelchair,...

Hi all,---- With Ataxia, I really do not know yet what kind I have got, I just g...

•5 years ago

Treadmill info, please? And a little ramble about how it is, now.

I am lucky. I can walk, with my sturdy rollator, or in deserted places just holding my spouse's hand- a massive change from 15 months ago. Or even 4 months...

I am lucky. I can walk, with my sturdy rollator, or in deserted places just hold...

•5 years ago

Need some advise

Ok need some help Husband came come after full day of work. On way home he said his left arm went numb. Like pins and needles. He can’t grip my hand...

Ok need some help Husband came come after full day of work. On way home he sai...

Wifeconcerned19

•5 years ago

Current state of SCA treatments. A new summary.

I came across an excellent paper today that has a summary of most of the main treatments being explored for SCAs. I found the conclusion at the end to be most...

I came across an excellent paper today that has a summary of most of the main tr...

•5 years ago

A Sad Day

My mum died this afternoon and I know it is something that at some stage we all deal with, but because of my condition I couldn't just jump in a car or on a...

My mum died this afternoon and I know it is something that at some stage we all ...

•5 years ago

Cycling may help SCA :)

So anyone who reads my posts knows I'm a huge fan of running on a treadmill, and I am often asked if using a treadmill is the only type of exercise with...

So anyone who reads my posts knows I'm a huge fan of running on a treadmill, and...

•5 years ago

Useful Website:

I've been following BMC for some time and see they now have a specific website for Cerebellum and Ataxia which might be of interest....

I've been following BMC for some time and see they now have a specific website f...

•5 years ago

Sth Yorks Ataxia Support Group

Hi all. The next meeting will be 11.00am, Thursday 4th April 2019 at The Circle, Rockingham Lane, Sheffield. New (and old) members, carers and family are...

Hi all. The next meeting will be 11.00am, Thursday 4th April 2019 at The Circle,...

•5 years ago

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Swallowing

Recently it has gotten harder for me to swallow and can foresee that shortly I may not be able to swallow at all. Please share with me ur experiences re....

Recently it has gotten harder for me to swallow and can foresee that shortly I m...

•5 years ago

Puzzled

I think there is some confusion in your website. Have jut received some posts between lottiejemma and senoja which has bp

I think there is some confusion in your website. Have jut received some posts be...

•5 years ago

info for understanding For Me Jemma 42

Hi everybody, I am new here, I seen my Neurologist Last Thursday, and she said that it is time to get a wheelchair, as I must not walk far ( I can't anyway )...

Hi everybody, I am new here, I seen my Neurologist Last Thursday, and she said t...

•5 years ago

Dizziness upon walking

Hello, my friend has ataxia. His neurologists is "guessing" that he may have MSA-C despite tests and symptoms not being neatly pigeon holed into that...

Hello, my friend has ataxia. His neurologists is "guessing" that he may have MS...

•5 years ago

Trionic Rollator ( see message from pinjem)

Just read post from pinjem.I bought a mobility walker from Trionic as I was hoping to go to the Arctic for a ' bucket type ' holiday. In my enthusiasm i...

Just read post from pinjem.I bought a mobility walker from Trionic as I was hopi...

•5 years ago

Fear

I would like to know about some things. If u r open to answering g my question I would appreciate that. How and when in ur life wasit czdiscovered u had...

I would like to know about some things. If u r open to answering g my question I...

•5 years ago

3 years and counting symptom free.

I have SCA1 and have posted links to my regimen many times before. Three years ago when I first saw symptoms, I started with just two supplements and today I...

I have SCA1 and have posted links to my regimen many times before. Three years a...

•5 years ago

How long is a long time, waiting for an appeal?

All this "talk" about, go to a Tribunal Appeal, is all well and good, and comes from a good place... BUT the time it takes, other serious conditions, mean one...

All this "talk" about, go to a Tribunal Appeal, is all well and good, and comes ...

•5 years ago

100000 genome test

Hi I was involved in the 100000 genome test and I'm wandering if anyone yet has had results back either with a diagnosis or not?

Hi I was involved in the 100000 genome test and I'm wandering if anyone yet has ...

•5 years ago

Newly diagnosed

I am 79 yrs old and have recently been diagnosed with cerebellum ataxia. I see it as a death sentence. Some feedback please

I am 79 yrs old and have recently been diagnosed with cerebellum ataxia. I see i...

•5 years ago

Having headache too

I have been taking Betahistine for five days but I’m getting up with headache all over my head and it feels like Cotton wool Carnot think straight I think it...

I have been taking Betahistine for five days but I’m getting up with headache al...

•5 years ago

Mobility Aid

Hi all...just seen this on fb. Hope someone may find it useful....

Hi all...just seen this on fb. Hope someone may find it useful....

•5 years ago

Survey to improve services for people with ataxia

Hello all, Ataxia UK are working with researchers at University College London to learn more about the healthcare experiences of patients with ataxia in the...

Hello all, Ataxia UK are working with researchers at University College London t...

•5 years ago

PIP..... yet again

Yes, am going through the procedure again (am a glutton for punishment). I have done all the form filling (with help ) and will not attend the assessment on my...

Yes, am going through the procedure again (am a glutton for punishment). I have ...

•5 years ago

are there any life insurance co. that cover people with ataxia. i have tried a few and got turned down.i am not looking for over 50 cover

•5 years ago

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