Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for May 2018

Help around Disney

Hi everyone I've got a holiday booked next year to Disney in Florida. Whilst looking forward to it I am apprehensive about the amount of walking around the...

Hi everyone I've got a holiday booked next year to Disney in Florida. Whilst loo...

SamGH

•6 years ago

16 Replies

Wrist support

Has anyone got experience using one of these? I use a walking stick but I'm finding more and more my wrist is hurting because of the pressure on putting on my...

Has anyone got experience using one of these? I use a walking stick but I'm fin...

SamGH

•6 years ago

5 Replies

Tasigna (Nilotinib) as a treatment/cure for SCA?

Hi, I am wondering if anyone has tried Tasigna (Nilotinib - FDA-approved treatment for cancer of the white blood cells) as a treatment/cure for cerebellar...

Hi, I am wondering if anyone has tried Tasigna (Nilotinib - FDA-approved treatme...

Goodlifee

•6 years ago

19 Replies

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3rd floor

Hi everyone Living with ca and living on the 3rd floor block of flats . What’s the chance of me getting ground floor property with my condition . Do I stand...

Hi everyone Living with ca and living on the 3rd floor block of flats . What’s ...

rickstar

•6 years ago

4 Replies

Ramadan

Hello all my good people, I'm sorry for being unactive. Been thinking a lot. I want to know about fasting, does it affect people like me with Sca. I've been...

Hello all my good people, I'm sorry for being unactive. Been thinking a lot. I ...

illerpath

•6 years ago

7 Replies

Thyroid and Ataxia

Hi, I’m interested to hear if anyone has had their Thyroid tested privately, specifically for a faulty DI02 gene and low T3 count (RT3 blood test) ? A faulty...

Hi, I’m interested to hear if anyone has had their Thyroid tested privately, spe...

PeteW

•6 years ago

12 Replies

Sweating

Does anyone else with SCA sweat a lot? Maybe got nothing to do with the Ataxia but don’t remember having this problem before x

Does anyone else with SCA sweat a lot? Maybe got nothing to do with the Ataxia b...

EmWakie

•6 years ago

4 Replies

Churning stomach feeling

hi all, this may have nothing to do with ataxia, I'm not sure. I often have periods of weeks of being very aware of my stomach/intestines feeling like they're...

hi all, this may have nothing to do with ataxia, I'm not sure. I often have peri...

wibblywobbly

•6 years ago

9 Replies

Balance clinic

After reading article in the mail news paper from professor rea in Leicester .All about balance problems to do with the inner ear.and things he can do to...

After reading article in the mail news paper from professor rea in Leicester .Al...

golfingsue

•6 years ago

13 Replies

Advice on treadmill

I am thinking of getting a treadmill to use at home. I have never used one and my balance is pretty shaky so I don't know how safe they are to use. Are there...

I am thinking of getting a treadmill to use at home. I have never used one and m...

ConantheLibrarian

•6 years ago

17 Replies

MSA OR ATAXIA OR BOTH?

Now my neurologist says I have MSA plus ataxia, He prescribed amatadine to deal with the PD-like symptoms I don't have PD but PD like symptoms... Has...

Now my neurologist says I have MSA plus ataxia, He prescribed amatadine ...

neta

•6 years ago

5 Replies

Neurophysiological testing for temors

Hi there, just wondering if anyone else has had neurophysiological testing for temors (uk) & what this entails? Many thanks in advance.

Hi there, just wondering if anyone else has had neurophysiological testing for t...

Legs-alive

•6 years ago

10 Replies

LSVT

I wondered if anyone else here is taking part in or has completed the LSVT speech trial for Friedreich's Ataxia?

I wondered if anyone else here is taking part in or has completed the LSVT speec...

medea

•6 years ago

1 Reply

10yr old Son diagnosed with Friedreichs Ataxia and moderate HCM

Living in Colorado/USA and our 10yr old son about to be diagnosed with FA and HCM. We are only waiting for genetic test to come back to confirm what doctors...

Living in Colorado/USA and our 10yr old son about to be diagnosed with FA and HC...

Corbintlg

•6 years ago

5 Replies

Treadmill walking with a harness - it helped SCA patients.

So here is a paper I found today. The number of people studied was small, but it is a definite affirmation of what I have been saying over and over . . . talk...

So here is a paper I found today. The number of people studied was small, but i...

sunvox

•6 years ago

7 Replies

Stem cell treatment for SCA

Please refer to quantum therapy for SCA

Ernest_lam

•6 years ago

10 Replies

Esa

Hi everybody its me again I have been off work for 6 months, been receiving ssp, but this has finished now, I have been receiving esa for the last 3 weeks. I...

Hi everybody its me again I have been off work for 6 months, been receiving ssp,...

rickstar

•6 years ago

4 Replies

Wheel chairs

Does anyone have the trouble I have using an electric wheelchair which has a mind of its own? It's a six wheel quickie Salsa with the drive wheel in the...

Does anyone have the trouble I have using an electric wheelchair which has a min...

tedjohnson

•6 years ago

5 Replies

ataxia and the workplace

Hi everybody. I am just looking for some advice. I can't tell you what I do for a living but my ataxia does affect me at work sometimes. I have SCA6 in a...

Hi everybody. I am just looking for some advice. I can't tell you what I do for ...

poolboy

•6 years ago

4 Replies

Going to Miami with cerebellum ataxia

Got stopped at Thorpe Park ,few years back , they said they thought I was drunk the way I was walking. I have cerebellum ataxia My consultant has told me I...

Got stopped at Thorpe Park ,few years back , they said they thought I was drunk ...

rickstar

•7 years ago

26 Replies

Harvard/MGH Survey for Ataxian - Please Participate

Hi Guys, Mass General Hospital is doing a survey and recording responses from people that are either affected by or are giving support to patients with Ataxia...

Hi Guys, Mass General Hospital is doing a survey and recording responses from p...

mpagganwala

•7 years ago

8 Replies

Diagnosis

Dylan finally got his diagnosis today and I have never heard of it. He has Lhermitte duclos disease or dysplasic cerebellar gangliocytoma. Has anyone heard of...

Dylan finally got his diagnosis today and I have never heard of it. He has Lherm...

Tjg18676

•7 years ago

2 Replies

Depression

Just wanted to say a big thank you for all your messages of support I’m home after 2 weeks in a psychiatric hospital and am now under the crisis Team who will...

Just wanted to say a big thank you for all your messages of support I’m home af...

bevvick1964

•7 years ago

16 Replies

Not tuned in

I realised that earlier I wrote a post to something that was entered 6 years ago!

I realised that earlier I wrote a post to something that was entered 6 years ago...

springlove

•7 years ago

1 Reply

MUFFLED HEARING IN FA

HI EVERYONE , Does anyone use or have tried any FM -LISTENING DEVICE to improve hearing loss/ muffled sounds in FA . My 20yr old son can never UNDERSTAND what...

HI EVERYONE , Does anyone use or have tried any FM -LISTENING DEVICE to improve ...

kazcooper

•7 years ago

3 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for May 2018

Help around Disney

Wrist support

Tasigna (Nilotinib) as a treatment/cure for SCA?

3rd floor

Ramadan

Thyroid and Ataxia

Sweating

Churning stomach feeling

Balance clinic

Advice on treadmill

MSA OR ATAXIA OR BOTH?

Neurophysiological testing for temors

LSVT

10yr old Son diagnosed with Friedreichs Ataxia and moderate HCM

Treadmill walking with a harness - it helped SCA patients.

Stem cell treatment for SCA

Esa

Wheel chairs

ataxia and the workplace

Going to Miami with cerebellum ataxia

Harvard/MGH Survey for Ataxian - Please Participate

Diagnosis

Depression

Not tuned in

MUFFLED HEARING IN FA

Search posts

Latest poll

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

Topics

Archive