Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,032 members • 4,571 posts

All posts for September 2019

Another Day, Another Smile

Restless night, but better than others, so mustn’t complain, be happy🤗 Watched this film for the first time - “The Secret Life of Pets” Thoroughly enjoyed...

Restless night, but better than others, so mustn’t complain, be happy🤗 Watched ...

Hidden

•5 years ago

11 Replies

Genome project

My neurologist heads the genome project and told me in May they had started contacting people, the first is where they have found something. I still haven’t...

My neurologist heads the genome project and told me in May they had started cont...

Cupcake12345

•5 years ago

2 Replies

EA1

Ji I'm still waiting for results from the 100000 genome test.....has anyone heard back yet if you took part?

Ji I'm still waiting for results from the 100000 genome test.....has anyone hear...

anihol

•5 years ago

11 Replies

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A good day today

I have had a very good day today. I was able to do a 3.5 mile walk this morning. Then go into my loft and finish sorting my loft installation. Just back...

I have had a very good day today. I was able to do a 3.5 mile walk this mornin...

KiwiBob

•5 years ago

25 Replies

Reminder from Simone

Hello everyone. Simone also reminded me that I hadn't posted for 4 years. At that time my daughters condition worsened, she couldn't stand, was regularly...

Hello everyone. Simone also reminded me that I hadn't posted for 4 years. At th...

pazzamadre

•5 years ago

14 Replies

John

I was diagnosed with ataxia back in 2007 which was caused by alcohol. I've stopped drinking 2014 and my atax improved a bit but that's all.

I was diagnosed with ataxia back in 2007 which was caused by alcohol. I've stopp...

jono102

•5 years ago

4 Replies

Ataxia members in the Cambridge area

Anyone interested in setting up an Ataxia group in Cambridgeshire??

Edwardparsons

•5 years ago

1 Reply

Please Close this Account

How do I close this account? My wife, DizzyLady, died in May 2018.

DizzyLady

•5 years ago

4 Replies

I am reminded that I havent posted for a very long time

It''s true that I havent posted for a very long time but.. reading through all my replies, there really isnt much to say. I shall be 77 in November and now use...

It''s true that I havent posted for a very long time but.. reading through all m...

PatsyIpswich

•5 years ago

6 Replies

results

Does anyone know how long it takes to get ataxia gene panel results from Sheffield? Thanks.

Does anyone know how long it takes to get ataxia gene panel results from Sheffie...

suzie44na

•5 years ago

4 Replies

International Ataxia Awareness Day is tomorrow!

Hi everyone, I hope you are all well. It's IAAD tomorrow and we'll be raising awareness of ataxia across social media for the next week. We'll be sharing...

Hi everyone, I hope you are all well. It's IAAD tomorrow and we'll be raising aw...

Hidden

•5 years ago

1 Reply

Another Question

Hi The only things I appear to be asking are questions that relate to ataxia symptoms. It makes me feel better knowing the things that happen to me are...

Hi The only things I appear to be asking are questions that relate to ataxia sym...

weegiz12345

•5 years ago

20 Replies

Oxford's Neurogenetics Clinic

Hi there, to cut a long story cut extremely short, my mother (55 years old) has been under Neurology since November 2018 and was found to have "severe and...

Hi there, to cut a long story cut extremely short, my mother (55 years old) has ...

RN12120

•5 years ago

8 Replies

Looking for CANVAS sufferers

Hi there, I joined this forum because my mother has CANVAS. She was officially diagnosed a year ago - after many years of neurologists calling her a...

Hi there, I joined this forum because my mother has CANVAS. She was officially...

17KGB

•5 years ago

17 Replies

Epigenetics

Some discussion wanted here, please... A holistic GP I also see, seems to think that 'genetics' or 'genes' is an old theory, given what we now know about...

Some discussion wanted here, please... A holistic GP I also see, seems to think ...

Poppy214

•5 years ago

Be the first to reply

This is just information

https://rarediseases.org/rare-diseases/autosomal-dominant-hereditary-ataxia/

Hidden

•5 years ago

6 Replies

Keto

Is anyone here on a ketogenic diet? It ways originally developed for epilepsy but is said to be beneficial for other neurological disorders but I haven’t found...

Is anyone here on a ketogenic diet? It ways originally developed for epilepsy bu...

Hidden

•5 years ago

4 Replies

Cerebellum shrinking

Is the cause of symptoms that the cerebellum continues shrinking . Has anyone experienced not having more and more symptoms. Has any one experienced mild...

Is the cause of symptoms that the cerebellum continues shrinking . Has anyone e...

Carolss

•5 years ago

5 Replies

Met a soulmate

Finally got to meet the lovely veteran and his lovely wife Anne Had a wonderful afternoon chatting and laughing Looking forward to the next time 🤗🤗🤗

Finally got to meet the lovely veteran and his lovely wife Anne Had a wonderful...

bevvick1964

•5 years ago

7 Replies

A helpful link to any member living in India

http://www.swavlambancard.gov.in/ Unique disability ID.

wobblybee

•5 years ago

Be the first to reply

Health care for ataxia

Hello. My husband is English but I am Canadian. We are considering settling in the UK but my symptoms for SCA6 have become more pronounced lately. Can anyone...

Hello. My husband is English but I am Canadian. We are considering settling in t...

GLBLWK_SCA6

•5 years ago

Be the first to reply

Daughter has Episodic Ataxia Type 1

Hello everyone. I am new to the group. My daughter is 17 and we are in the UK. She wants to go to university next year and we have to start her...

Hello everyone. I am new to the group. My daughter is 17 and we are in the UK...

TopMum

•5 years ago

4 Replies

DAT scan

My husband was diagnosed years ago but has had a change of Neurologist and the new one wants a DAT scan done. It is to see how much dopamine there is in the...

My husband was diagnosed years ago but has had a change of Neurologist and the n...

Linsue

•5 years ago

4 Replies

Manchester airport

A warning to all those that are travelling from and to manchester airport, its awful, very stressful, 10 minute walk to the gate, if like me you use a...

A warning to all those that are travelling from and to manchester airport, its a...

auntiesally

•5 years ago

20 Replies

Fascinating Podcast

Below is a link to the Doctor's Farmacy and a podcast regarding links between our gut microbiome and diseases such as ALS, MS, Parkinsons and I believe......

Below is a link to the Doctor's Farmacy and a podcast regarding links between ou...

nycgeordie

•5 years ago

4 Replies

Reversing gluten Ataxia

Does anyone know how long you can have gluten Ataxia before it cannot be reversed ?

Does anyone know how long you can have gluten Ataxia before it cannot be reverse...

KiwiBob

•5 years ago

23 Replies

Knee replacement

Hi all hope everyone is well and healthy due to have knee replacement I have Ataxia off the cerebellum just a bit worried about the op thank you .

Hi all hope everyone is well and healthy due to have knee replacement I have At...

Shahidzak

•5 years ago

8 Replies

First Post

Hi there. Just an introductory post. My name's Connor, I have FA, and I'm 24. I was diagnosed when I was 9, had spinal fusion surgery at 12/13, I started using...

Hi there. Just an introductory post. My name's Connor, I have FA, and I'm 24. I ...

Lisbon67

•5 years ago

9 Replies

Not sure about next steps

Hi all. My brother has been battling with ataxia for about three years (he is 46). It was caused by a lymphoma, which he has managed to defeat. But the ataxia...

Hi all. My brother has been battling with ataxia for about three years (he is 46...

Larobby

•5 years ago

7 Replies

Anticipation

I hv sca 3. Is it true about anticipation? If you inherit the gene from maternal side as opposed to paternity side, symptoms will show later?

I hv sca 3. Is it true about anticipation? If you inherit the gene from maternal...

Jujubeelu

•5 years ago

14 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for September 2019

Another Day, Another Smile

Genome project

EA1

A good day today

Reminder from Simone

John

Ataxia members in the Cambridge area

Please Close this Account

I am reminded that I havent posted for a very long time

results

International Ataxia Awareness Day is tomorrow!

Another Question

Oxford's Neurogenetics Clinic

Looking for CANVAS sufferers

Epigenetics

This is just information

Keto

Cerebellum shrinking

Met a soulmate

A helpful link to any member living in India

Health care for ataxia

Daughter has Episodic Ataxia Type 1

DAT scan

Manchester airport

Fascinating Podcast

Reversing gluten Ataxia

Knee replacement

First Post

Not sure about next steps

Anticipation

Search posts

Latest poll

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

Topics

Archive