Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,084 members•4,658 posts

All posts for March 2017

Fundraising

Hello everyone, how exciting about trehalose. It would be great if we all had some hope for our future - the sooner the better! In the meantime I think we...

Hello everyone, how exciting about trehalose. It would be great if we all had s...

Zigalig

•8 years ago

2 Replies

Trehalose support growing.

These are email responses to my request for help initiating a clinical trial of orally ingested trehalose. Of interest I would note that one doctor had this...

These are email responses to my request for help initiating a clinical trial of ...

JP66

•8 years ago

11 Replies

medicine withdrawal

ive just heard that the government are to make people pay for paracetamol fish oils etc i thought yer good idea then read on there also adding fentanyl...

ive just heard that the government are to make people pay for paracetamol fish o...

Guyb

•8 years ago

1 Reply

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depressed?

I feel alone with no-one who understands how frustrated and anxious I feel. What should I do?. Have had the suggestion I should ask my doctor for some...

I feel alone with no-one who understands how frustrated and anxious I feel. What...

flawlesssFayx

•8 years ago

13 Replies

New to this forum

Hi I'm Tina 49yrs old. I have the inherited form of SCA6 from my mothers side. She is Now 80yrs old and cannot walk anymore. I started losing my balance at...

Hi I'm Tina 49yrs old. I have the inherited form of SCA6 from my mothers side. ...

Mneutz

•8 years ago

12 Replies

Bloody gardening

Spent 2 days gardening and God am I paying for it now. 🤔🤔🤔must be mental !!!!!

Spent 2 days gardening and God am I paying for it now. 🤔🤔🤔must be mental !!!!...

bevvick1964

•8 years ago

9 Replies

Death in the family and the Trehalose discussion.

Sorry I have been unresponsive and kind of out of it. My husband very unexpectedly died (way 2 young) and I have much to sort out. Of course this entire...

Sorry I have been unresponsive and kind of out of it. My husband very unexpecte...

neta

•8 years ago

36 Replies

Alcohol.

Hi I have cerebellum ataxia. Does anyone find if they have an alcoholic drink it helps with the tremors? I find it can, however the next day they may be worse....

Hi I have cerebellum ataxia. Does anyone find if they have an alcoholic drink it...

sarb1

•8 years ago

8 Replies

Update

Hello there I really do not want to cause trouble and I feel a bit silly but I have been asked in a few private emails for an update so here goes! This proves...

Hello there I really do not want to cause trouble and I feel a bit silly but I h...

Litty

•8 years ago

6 Replies

Update on breathing problems.

It appears I have ataxia breathing caused by my diaphragm not working properly everyone I take a breath. If I am thinking about my breathing it is ok but try...

It appears I have ataxia breathing caused by my diaphragm not working properly ...

anihol

•8 years ago

1 Reply

Fatigue

Hi are there any Ataxians out there who have tried modafinil for fatigue?

anihol

•8 years ago

5 Replies

Hearing in groups

Hi, can anyone recommend a hearing device for when you are out in groups? I have had my actual hearing tested and it is OK, its just when out I have problems...

Hi, can anyone recommend a hearing device for when you are out in groups? I have...

Zigalig

•8 years ago

2 Replies

Tai Chi

Hi everyone I have been told to try tai chi in order to help with my balance. I tried my first tai chi class today and I found it really helped me focus on my...

Hi everyone I have been told to try tai chi in order to help with my balance. I ...

Lockmaster

•8 years ago

3 Replies

Ataxia and Heart Problems

I have FA, diagnosed about 20 years ago at age 19. I have been very lucky and progression has been slow. However my heart is not doing so well. I have Dilated...

I have FA, diagnosed about 20 years ago at age 19. I have been very lucky and pr...

Rudders_77

•8 years ago

6 Replies

Types of exercise that induce ataxia (EA)

I have symptoms of EA that last for minutes to hours. Still waiting for the genetic result at the moment. I used to be a keen cyclist regularly clocking up...

I have symptoms of EA that last for minutes to hours. Still waiting for the gene...

AnnaP2016

•8 years ago

7 Replies

Pip assessment

Fed up we asked for a reconsideration on daily living only as had been awarded enhanced mobility. Only to receive letter today saying that still no daily...

Fed up we asked for a reconsideration on daily living only as had been awarded e...

rankin1st

•8 years ago

7 Replies

hello

hi just found you im 45 with hemiphlegic migraine and cerebellar ataxia type 2. i inherited this off my mum who didnt know anything about her family and...

hi just found you im 45 with hemiphlegic migraine and cerebellar ataxia type 2...

littlelegs914

•8 years ago

2 Replies

Oooosore!!!!

I am confined to bed at the moment and am getting a sore bottom and heels what should I use to alleviate the problem. I Am already lying on a pillow thanks all...

I am confined to bed at the moment and am getting a sore bottom and heels what s...

VivienMeeson1

•8 years ago

7 Replies

Booked Myself A Holiday😀

Having promised myself I would go on a quiet holiday - just me, nobody else - when I left the Navy in '79. I never quite got round to doing it, something...

Having promised myself I would go on a quiet holiday - just me, nobody else - wh...

Hidden

•8 years ago

18 Replies

Buspirone, CA and depression

As I understand it, there seems to be a link between CA and depression. As in, the damage to your brain also causes depression, as if the symptoms aren't...

As I understand it, there seems to be a link between CA and depression. As in, t...

Mermaidia11

•8 years ago

7 Replies

Trehalose (orally) said to be useless

A leading Israeli neurologist sadly said this about trehalose. (I protected his privacy.) He was involved in its development and isn aware that some people are...

A leading Israeli neurologist sadly said this about trehalose. (I protected his ...

neta

•8 years ago

17 Replies

Help me please

All of a sudden my hand hurts and I can't pick anything up. What is happening to me

All of a sudden my hand hurts and I can't pick anything up. What is happening to...

VivienMeeson1

•8 years ago

6 Replies

Trehalose?

What happened to this product? (Trehalose) Did I miss something?

neta

•8 years ago

25 Replies

Information appreciated 😀

I have CA and my mobility has gotten much worse and am wondering if any grants aŕe available to help in getting a drive. Any information really apprciated as...

I have CA and my mobility has gotten much worse and am wondering if any grants a...

claire01

•8 years ago

8 Replies

So Supportive

Hi everyone. I do not have Ataxia myself, but have a close friend who has it. I read all the posts on this forum and I am amazed at the support you all have...

Hi everyone. I do not have Ataxia myself, but have a close friend who has it. ...

sammie62king

•8 years ago

2 Replies

To winge or not to winge

hallo everyone! I sat down to winge. You know the sort,,,,,,I'm 77, have had ataxia for 45 years and today am so peed off etc etc. BUT read some life...

hallo everyone! I sat down to winge. You know the sort,,,,,,I'm 77, have had a...

frazzled1

•8 years ago

29 Replies

Blue badge

Hello.could i get a blue badge even though im in work/dont claim dla?thanks.

Nottscounty1862

•8 years ago

2 Replies

Hello

Hi everyone my name is Phil and i live in Liverpool. I was diagnosed with Cerebellar Ataxia 12 months ago and i hope to get some more understanding of my...

Hi everyone my name is Phil and i live in Liverpool. I was diagnosed with Cerebe...

Lockmaster

•8 years ago

22 Replies

Sensory ataxia neuropathy

Hi, I've recently been diagnosed with sensory ataxia neuropathy. Has anyone else on here been diagnosed with it? Finding it very hard to come to terms with,...

Hi, I've recently been diagnosed with sensory ataxia neuropathy. Has anyone else...

Adelaide1909

•8 years ago

12 Replies

Webcast for those who wish they were at the NAF Conference in San Antonio, Texas....

There are broadcasts from National Ataxia Foundation’s conference today at 15.00 – 18.00 and 19.00 to 20.00. Ataxia research updates are from 17.00 – 18.00...

There are broadcasts from National Ataxia Foundation’s conference today at 15.00...

SueMillman

Partner•8 years ago

2 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for March 2017

Fundraising

Trehalose support growing.

medicine withdrawal

depressed?

New to this forum

Bloody gardening

Death in the family and the Trehalose discussion.

Alcohol.

Update

Update on breathing problems.

Fatigue

Hearing in groups

Tai Chi

Ataxia and Heart Problems

Types of exercise that induce ataxia (EA)

Pip assessment

hello

Oooosore!!!!

Booked Myself A Holiday😀

Buspirone, CA and depression

Trehalose (orally) said to be useless

Help me please

Trehalose?

Information appreciated 😀

So Supportive

To winge or not to winge

Blue badge

Hello

Sensory ataxia neuropathy

Webcast for those who wish they were at the NAF Conference in San Antonio, Texas....

Search posts

Latest poll

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

Topics

Archive