Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for January 2013

How do other people manage with driving.

I can't manage to drive for more than about 1/2 hour now as the concentration gives me headaches and I am scared of becoming a dangerous driver. Got my foot...

I can't manage to drive for more than about 1/2 hour now as the concentration gi...

•12 years ago

See www.dashaway.net for a rollator which looks as though it aids posture better than walking poles, ideal perhaps for a tall person.

The rollator shown in the ad looks cumbersome, obviously it depends where you want to use it as to the type best suited.

The rollator shown in the ad looks cumbersome, obviously it depends where you w...

•12 years ago

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Is there CA stuff avaiable in the Cambridge U area? My husband might be posted there next year. And I am meant to go with. Neta

•12 years ago

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How tired are you all. How much do you need to sleep everyday? I have to sleep for at least two hours every afternoon.

•12 years ago

Has anyone with double-vision been offered a Botox injection to relax the eye muscle.

•12 years ago

Newcastle leads the way on rare disease research!

This was front page news in my local paper on Saturday. Experts in Newcastle will lead 70 research centres across Europe in a programme to find new...

This was front page news in my local paper on Saturday. Experts in Newcastle w...

•12 years ago

Confused !!

I have just been asked to make an appointment at the n-oncology department at the Queen Square hospital this has come out of the blue. How is this connected to...

I have just been asked to make an appointment at the n-oncology department at th...

•12 years ago

Excuse me!

Are the symptons we all expierence Presented to others as an excuse? In other words do we ataxians blame All of our ailments on ataxia? Regards Barney

Are the symptons we all expierence Presented to others as an excuse? In other ...

•12 years ago

The John Radcliffe Hospital, Dr. Henderson- Slater, Consultant in Neurological Disability and Rehabilitation Medicine & the OCE

My appointment at the John Radcliffe Hospital With Dr. Henderson- Slater, Consultant in Neurological Disability and Rehabilitation Medicine (OCE – The Oxford...

My appointment at the John Radcliffe Hospital With Dr. Henderson- Slater, Consul...

Volunteer•12 years ago

Can anyone hop on one leg?

I can do this but with great difficulty!

I can do this but with great difficulty!

•12 years ago

Can "doping" cocktails, which build strength, be good for ataxians? Neta

Maybe one good thing to come out of the Lance Armstrong scandal is that doping cocktails with their share of muscle and strength building meds, can be of use...

Maybe one good thing to come out of the Lance Armstrong scandal is that doping c...

•12 years ago

Disabled showers/ wet-rooms. Any tips please?

To avoid having to go upstairs to bath, we are looking at converting our downstairs shower (quite high and difficult for me to get into at the moment) into a...

To avoid having to go upstairs to bath, we are looking at converting our downsta...

•12 years ago

Link to Rare Disease UK Survey

Dear all Rare Disease UK have sent the following link: http://survey5.orcinternational.com/surveys/J3688613UK/J3688613UK_WS.asp I hope you have more...

Dear all Rare Disease UK have sent the following link: http://survey5.orci...

Administrator•12 years ago

Bad weather cancels Ataxia UK meetings

Please note the following meetings are cancelled: Meetings due to be held on the 19 Jan 2013 will be re-arranged: Ataxia UK South East London Support Group...

Please note the following meetings are cancelled: Meetings due to be held on ...

•12 years ago

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Has anyone investigated USA Federal info or other national research on ataxia? Or entered in govt trials? Neta

•12 years ago

Survey for Rare Disease UK Update

Many thanks to those who have tried to take this survey. I have reported the problem and we are waiting to hear how it may be resolved. I will let you know...

Many thanks to those who have tried to take this survey. I have reported the pro...

Administrator•12 years ago

What (if any) treatment are you getting for your Ataxia

I have late-onset cerebellar Ataxia. I'm 61 and was diagnosed 10 years ago. Now using a wheelchair. I take no medication but worried about my lack...

I have late-onset cerebellar Ataxia. I'm 61 and was diagnosed 10 years ago. No...

•12 years ago

I use a fourwheeled rollator at home but would now like one for outside which will fit in the car Any suggestion?please

•12 years ago

Cycling the length of South America to fundraise for Ataxia UK

My name is Andreas and I am a Doctor from Liverpool. I am taking a year out of my training to take part in a 6 month cycle across the length of South America....

My name is Andreas and I am a Doctor from Liverpool. I am taking a year out of m...

•12 years ago

Is vertigo part of having SCA6, or a coincidence?

•12 years ago

The Ataxia.UK Specialist Centre At The John Radcliffe Hospital - my experience

Specialist Ataxia Centre at the John Radcliffe, Oxford Referral I contacted Ataxia UK initially to tell them I was interested in going to the John...

Specialist Ataxia Centre at the John Radcliffe, Oxford Referral I contac...

Volunteer•12 years ago

Survey for Rare Disease UK-for carers and patients with rare diseases.

Dear all Please see an e-mail Ataxia UK have received from Rare Disease UK below. As I have copied and pasted this from my e-mail account the link t o the...

Dear all Please see an e-mail Ataxia UK have received from Rare Disease UK be...

Administrator•12 years ago

Hate this!Hard to make plans!! Neta

I was diagnosed with cerebeller ataxia induced by auto-immune issues something in 2010-- this afterignoring the swaying which first appeared in aound 2005-6....

I was diagnosed with cerebeller ataxia induced by auto-immune issues something i...

•12 years ago

This is a reply to a post from "Nita" Re: John Hopkins University CA center as for some reason i can't add a reply directly to the post.

Hi Neta, I'd never heard of "John Hopkins University" before. I tapped into their website and found it really informative, It especially explained the...

Hi Neta, I'd never heard of "John Hopkins University" before. I tapped int...

•12 years ago

Has anyone with CA tried the special CA Center at Johns Hopkins University in the USA? Neta

•12 years ago

Just got an ipad for Xmas. Have eyesight problems due to my ataxia and would like a recommendation of a good app. for talking newspapers

•12 years ago

bad day

im feeling very frustrated at the moment my walking is deteriating and even walking a short distance with my rollater leaves me exhausted my husband is having...

im feeling very frustrated at the moment my walking is deteriating and even walk...

•12 years ago

Feet probs and operations??? HELP

Has anyone had their feet tendons cut because their to tight? Im having mine done in February and bit worried is their any downside/problems? What's the...

Has anyone had their feet tendons cut because their to tight? Im having mine don...

Volunteer•12 years ago

Has anyone investigated the efficacy of stem-cell research on ataxia? Neta

•12 years ago

HELP?! Going through things that may help.. Has anyone got a support dog, etc?

I am 25 and have possible CA or SCA, maybe hereditery. I can still walk but struggle unaided, I have slight downbeat nystagmus which only effects me on my...

I am 25 and have possible CA or SCA, maybe hereditery. I can still walk but stru...

•12 years ago

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