Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,141 members•4,725 posts

All posts for June 2018

First post

Hello everyone, I've just joined this forum and thought I had better introduce myself. My name is Lydia, I'm 26 years old and I have FA. I'm looking forward to...

Hello everyone, I've just joined this forum and thought I had better introduce m...

Penny-92

•7 years ago

10 Replies

Accepting life as it comes

I had a fall without major injuries except some muscular pain on my back. I was feeling a little depressed and watching TV while I had breakfast the presenter...

I had a fall without major injuries except some muscular pain on my back. I was...

isabelalfaiate

•7 years ago

7 Replies

At a loss

My 2 1/2yr old daughter was diagnosed with sca 44. Does anyone else have or know of anyone who has this? Doctors can't seem to give me answers where I am from....

My 2 1/2yr old daughter was diagnosed with sca 44. Does anyone else have or know...

Meara

•7 years ago

3 Replies

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Idebenone friedrichs ataxia

What meds and vitamins are people with friedtichs ataxia taking

Fifa20

•7 years ago

3 Replies

Hi there

Hello, I'm new to here and this is my first post. I was diagnosed with spinocellular ataxia in August 2011 and since then its been a rollercoaster with rapid...

Hello, I'm new to here and this is my first post. I was diagnosed with spinoce...

Wedny1

•7 years ago

11 Replies

Has Vitamin E supplements helped ataxia for some?

My neurologist has told me to ask doc for prescribed vitamin E tabs as my vitamin E levels are borderline low. Has anybody else been proscribed vitamin E and...

My neurologist has told me to ask doc for prescribed vitamin E tabs as my vitami...

Hidden

•7 years ago

5 Replies

A healthy diet

I was diagnosed with Ideopathic Cerubelar Ataxia in September 2016. Although this didn’t prevent me from working abroad the last two years, it does seem that...

I was diagnosed with Ideopathic Cerubelar Ataxia in September 2016. Although thi...

jadfg

•7 years ago

6 Replies

Ataxia UK Scottish Conference in Stirling

Dear all As some of you will know Ataxia UK held a conference in Stirling on Saturday. I thoroughly enjoyed it, especially catching up with friends and...

Dear all As some of you will know Ataxia UK held a conference in Stirling on Sat...

HarryB

Administrator•7 years ago

Be the first to reply

Testing negative

How many people in your families have tested negative x

lola261184

•7 years ago

8 Replies

Hi Maigold12

So sorry to hear.....you do have you hands full! First I've heard of this type of ataxia but there are so many different kinds and our challenges are great. It...

So sorry to hear.....you do have you hands full! First I've heard of this type o...

Hidden

•7 years ago

Be the first to reply

Some good news

Some of you might have seen my previous post about lymphoma and ataxia...my brother was diagnosed with both in November. He has gone through 6 cycles of...

Some of you might have seen my previous post about lymphoma and ataxia...my brot...

Larobby

•7 years ago

2 Replies

Is it the end? (warning, bit graphic)

I know this is NOT the right place, then again, maybe it is. But having sex/making love, whatever you want to call it, is a very tiring experience, and one...

I know this is NOT the right place, then again, maybe it is. But having sex/maki...

peterallison

•7 years ago

4 Replies

SCA3 gene silencing

I am happy to share what i just found. Might give me some hopes regarding my father too? https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.25264

I am happy to share what i just found. Might give me some hopes regarding my fat...

Zephyr10

•7 years ago

17 Replies

Why am I slurring it's embarrassing

So recently I have been slurring Infront of my family when talking to my dad and friends all of a sudden and I am trying to work out why. When the slurring...

So recently I have been slurring Infront of my family when talking to my dad and...

Cwats0789

•7 years ago

9 Replies

Stem-cell therapy

anyone heard about Stem-cell therapy...please let me know more details

vinupr

•7 years ago

1 Reply

holiday insurance

I have hereditary Ataxia and I was wondering if anyone can suggest a holiday insurance company to use. I have had a couple of quotes but they seem so...

I have hereditary Ataxia and I was wondering if anyone can suggest a holiday ins...

jojoducky

•7 years ago

7 Replies

What to expect long term.

Hello, I'm new to here and this is my first post. My mother has recently been diagnosed with alcoholic cerebellar degeneration. She had a truly awful few years...

Hello, I'm new to here and this is my first post. My mother has recently been di...

Amelia87

•7 years ago

3 Replies

Swimming

I have thought about going swimming but I am afraid that I won't be able to cope with the movement of the water with my cerebellar ataxia. Is swimming a bad...

I have thought about going swimming but I am afraid that I won't be able to cope...

studeo

•7 years ago

15 Replies

Double vision and poor balance

I am new here and just want to know if others have double vision and poor balance

I am new here and just want to know if others have double vision and poor balanc...

boxerattims

•7 years ago

7 Replies

82 and counting

I recently had my 82nd birthday, I used to think that I would be lucky to see 70! In a strange way I have to thank Ataxia for living so long. I used to run a...

I recently had my 82nd birthday, I used to think that I would be lucky to see 70...

robo1

•7 years ago

8 Replies

Anxiety around other people...

For my whole life I’ve been “The life of the party”, very sociable and always ready to go out and do something! I was a busy mother of three, ran a custom...

For my whole life I’ve been “The life of the party”, very sociable and always r...

Mariweena

•7 years ago

11 Replies

Ataxia Conference

Hi all. Have booked for the Derby conference later this year. I live in South Yorkshire and asking if anyone from here is going and looking for a travel...

Hi all. Have booked for the Derby conference later this year. I live in South Yo...

Capricorn9157

•7 years ago

2 Replies

When is it time for a wheelchair?

I've been thinking about this one a lot recently. I've slowed down in recent years and they have started using assistance at airports. I'm missing the bus more...

I've been thinking about this one a lot recently. I've slowed down in recent yea...

SamGH

•7 years ago

21 Replies

Nervous passenger

Hi, I am 67 and have been diagnosed with Ataxia and the consultant has told me there is a sensory element as well as balance problems. What I don't understand...

Hi, I am 67 and have been diagnosed with Ataxia and the consultant has told me t...

paullymaie-

•7 years ago

7 Replies

My P I P

Just a quick note to thank those who gave advice about P I P. I got letter on Fri and am getting enhanced rate for mobility so can keep motability car and...

Just a quick note to thank those who gave advice about P I P. I got letter on Fr...

celtic1888

•7 years ago

3 Replies

CBD OIL

Has anyone tried CBD oil if so did it help.Also does anyone have treatment at national hospital of neurology,Queens square London. For Ataxia

Has anyone tried CBD oil if so did it help.Also does anyone have treatment at n...

golfingsue

•7 years ago

12 Replies

Walking on sand

I was diagnosed with ms in 2005 and Parkinson’s in 2015. I was interested in the post about difficulties walking on sand. Years ago I was so aware of almost...

I was diagnosed with ms in 2005 and Parkinson’s in 2015. I was interested in th...

Twigga

•7 years ago

2 Replies

About me..

Hello, my name is Jenna and I am 19. I have friedreich’s ataxia. This is my first ever post on this, so I thought I’d start by saying hello 😂

Hello, my name is Jenna and I am 19. I have friedreich’s ataxia. This is my firs...

Jennax

•7 years ago

41 Replies

Confused

Perhaps it is my imagination but its seems that fewer people r responding to thus page... Also for reasons unknown to me this site immediately goes to...

Perhaps it is my imagination but its seems that fewer people r responding to ...

neta

•7 years ago

7 Replies

Wing walk

Yes, I’ve gone and booked myself on one. Think of me at 3.00pm on Saturday 15 September at Wickenby Aerodrome. I thought I ought to do it whilst I can! Its...

Yes, I’ve gone and booked myself on one. Think of me at 3.00pm on Saturday 15 Se...

Staggy1

•7 years ago

15 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for June 2018

First post

Accepting life as it comes

At a loss

Idebenone friedrichs ataxia

Hi there

Has Vitamin E supplements helped ataxia for some?

A healthy diet

Ataxia UK Scottish Conference in Stirling

Testing negative

Hi Maigold12

Some good news

Is it the end? (warning, bit graphic)

SCA3 gene silencing

Why am I slurring it's embarrassing

Stem-cell therapy

holiday insurance

What to expect long term.

Swimming

Double vision and poor balance

82 and counting

Anxiety around other people...

Ataxia Conference

When is it time for a wheelchair?

Nervous passenger

My P I P

CBD OIL

Walking on sand

About me..

Confused

Wing walk

Search posts

Latest poll

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

Topics

Archive