Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for March 2024

hello i am new to this group. i was daignosed in 2022 and have lack of information .

i am 46 and it is 8 years i feel some walking problems

femilia

•7 months ago

3 Replies

Care package for ataxia

I am very confused - what kind of care package do people with ataxia have - I need everyone help - I tell care manager that I have a mobility disability and...

I am very confused - what kind of care package do people with ataxia have - I ne...

Amynah

•7 months ago

15 Replies

Wall Pilates

Hi all, I recently signed up for an app to do a month of wall Pilates to get some exercise and strengthen my core but only did about 18 days. The app I used...

Hi all, I recently signed up for an app to do a month of wall Pilates to get so...

Eveie78

•7 months ago

2 Replies

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Leg Strength Change

Twice in last 6 months I’ve experienced a big change in leg strength. Once after plasma exchange (which lasted about 2/3 months), and again this week after a...

Twice in last 6 months I’ve experienced a big change in leg strength. Once after...

Ostap

•7 months ago

9 Replies

health

I think what was good for you before ataxia is good for you now. The only thing I had to give up was my tight rope walking as i needed two ropes because of my...

I think what was good for you before ataxia is good for you now. The only thing...

paul456

•8 months ago

4 Replies

Information

When first diagnosed in 2004/5 I knew is was incurable but wanted to know more. I never heard about this site, maybe it did not exist yet, and was directed...

When first diagnosed in 2004/5 I knew is was incurable but wanted to know more...

klazien

•8 months ago

1 Reply

Sara score

The last time I went to see my neurologist a couple of weeks ago, it was someone from the team who I hadn't met before. He did the SARA test on me and was very...

The last time I went to see my neurologist a couple of weeks ago, it was someone...

Tallguy101

•8 months ago

6 Replies

Happy

I was talking with my wife about this forum & we found that reply’s & advice given & support gained is quicker, more useful than going to physio, IT even...

I was talking with my wife about this forum & we found that reply’s & advice giv...

Littlepopeye

•8 months ago

3 Replies

Issues

hi there can anyone tell me if they have issues with their neck with ataxia as painful to lift head or just pain around shoulders & the back of the neck, I had...

hi there can anyone tell me if they have issues with their neck with ataxia as p...

Littlepopeye

•8 months ago

10 Replies

speech

Can anyone tell me, I have issues with my talking it’s not a slur but wanting to speak words out but not being able to, I know what I’m trying to say but I...

Can anyone tell me, I have issues with my talking it’s not a slur but wanting to...

Littlepopeye

•8 months ago

6 Replies

SadSad

One time in my life I could walk, run and play sport. I could row for miles in my friends boat. I could climb mountains with my friend Nigel. But not any...

One time in my life I could walk, run and play sport. I could row for miles in ...

paul456

•8 months ago

5 Replies

Experience of Ataxia post

I read a previous post that someone else wrote about how it feels to have Ataxia.....I cannot find it now! Please can anyone point me in right direction I'd...

I read a previous post that someone else wrote about how it feels to have Ataxia...

Frenchoak

•8 months ago

5 Replies

Helped Me

Just thought I would share the wee things that helped me last week. I arranged for someone to cut my grass once a fortnight . The council have put an assisted...

Just thought I would share the wee things that helped me last week. I arranged ...

Sea_

•8 months ago

6 Replies

Millar 69

hi don it really has been bad to you I walk like a drunk man and I have to hold the rail walking up stairs get tired legs just walking short distances but we...

hi don it really has been bad to you I walk like a drunk man and I have to hold ...

Pjpuk

•8 months ago

7 Replies

Art for sale- all for £75 +P&P Ataxia fundraiser

A virtual Art fundraiser for Ataxia UK. Follow the link just to look if you like but please share with anyone else who might be interested, on social media...

A virtual Art fundraiser for Ataxia UK. Follow the link just to look if you li...

pinjem

•8 months ago

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Ataxia Diagnosis.

hello my friends, after having had body tremors and shaking hand since I was a small boy, I had an appointment with a Neurologist at my local hospital on...

hello my friends, after having had body tremors and shaking hand since I was a s...

Veteran250

•8 months ago

18 Replies

Gluten ataxia

I'm going to try and get in touch with Sheffield I went gf in October my ataxia was always slow progression but since going gf it has dramatically worst...

I'm going to try and get in touch with Sheffield I went gf in October my ataxia ...

Tazwaz

•8 months ago

3 Replies

Do you want to take part in research to help advance speech therapies for ataxias?

The University of Strathclyde and US company LSVT Global are recruiting for participants with Friedreich’s ataxia (FA) aged 18 or over to take part in an...

The University of Strathclyde and US company LSVT Global are recruiting for part...

Irmmy

•8 months ago

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🙂 In April……Carers Support Group Meeting

Join us for our next Carers support group meeting on Thursday 18th April from 14:00-15:30. Exchange useful advice on caring for someone with ataxia while...

Join us for our next Carers support group meeting on Thursday 18th April from 14...

wobblybee

•8 months ago

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SCR6 Research

I had my yearly appointment with my neurologist yesterday and he mentioned he could do with more people with sca6 for research purposes. It’s usually done at...

I had my yearly appointment with my neurologist yesterday and he mentioned he co...

paul456

•8 months ago

2 Replies

Tremors

Does anyone suffer from tremors with their Ataxia? I cannot use my hands at all they’re so bad. I can’t even brush my teeth or unpeel a banana. No medication...

Does anyone suffer from tremors with their Ataxia? I cannot use my hands at all ...

Ostap

•8 months ago

12 Replies

AtaxiaUK ROADSHOW 2024

Let's get this show on the road! The Ataxia UK Roadshow is coming to the devolved nations for a series of one day events featuring an action packed...

Let's get this show on the road! The Ataxia UK Roadshow is coming to the dev...

wobblybee

•8 months ago

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I have ataxia SCA-7 / 43 rept

2 things you should try, please report. 1 I'm 56, damn old, half dead one can say. I'm still mentally in a very good condition. Physically quite medium. I...

2 things you should try, please report. 1 I'm 56, damn old, half dead one ca...

Tommi_

•8 months ago

3 Replies

Recently diagnosed, need some help !

Hi everyone ! First thanks for this group it can be triggering but also bring some positive thoughts ! I’m 22, and in june after 3 appt with neuros bc of...

Hi everyone ! First thanks for this group it can be triggering but also bring s...

Evagdnn

•8 months ago

14 Replies

Autosomal Recessive Spastic Ataxia (POLR3A gene affected)

Hi, I was wondering if anyone else has been diagnosed with Autosomal Recessibe Spastic Ataxia? When I was diagnosed in June 2021 Proffessor Hadjivasiliou at...

Hi, I was wondering if anyone else has been diagnosed with Autosomal Recessibe S...

JT0621

•8 months ago

2 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for March 2024

hello i am new to this group. i was daignosed in 2022 and have lack of information .

Care package for ataxia

Wall Pilates

Leg Strength Change

health

Information

Sara score

Happy

Issues

speech

SadSad

Experience of Ataxia post

Helped Me

Millar 69

Art for sale- all for £75 +P&P Ataxia fundraiser

Ataxia Diagnosis.

Gluten ataxia

Do you want to take part in research to help advance speech therapies for ataxias?

🙂 In April……Carers Support Group Meeting

SCR6 Research

Tremors

AtaxiaUK ROADSHOW 2024

I have ataxia SCA-7 / 43 rept

Recently diagnosed, need some help !

Autosomal Recessive Spastic Ataxia (POLR3A gene affected)

Search posts

Latest poll

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

Topics

Archive