Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,050 members • 4,597 posts

All posts for July 2021

Query on possible Cognitive regression SCA 19/ 22

So, yesterday Beth's carer said she was noticing Beth is repeating the same thing more often. We have noticed this too. Beth does have a learning disability as...

So, yesterday Beth's carer said she was noticing Beth is repeating the same thin...

Jenandbeth

•3 years ago

10 Replies

Diagnosis

Anyone know the difference between SCA 10 & SCAR10 I was diagnosed with SCAR10 but wondered what is the difference ....

Anyone know the difference between SCA 10 & SCAR10 I was diagnosed with SCAR10 b...

Tazmurray

•3 years ago

4 Replies

Meds

Hi, does anyone know if the NAF in America's medication for ataxia symptoms list is the same medication in the uk, just before I ask my GP for a referral to...

Hi, does anyone know if the NAF in America's medication for ataxia symptoms lis...

Tazmurray

•3 years ago

2 Replies

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Whole Genome Testing

🙂 Yesterday, I gave blood for Whole Genome Testing on the NHS. My Neurologist said it’s a new directive from the NHS, it came into force on 7 July. But, an...

🙂 Yesterday, I gave blood for Whole Genome Testing on the NHS. My Neurologist s...

wobblybee

•3 years ago

9 Replies

New wheelchair - where to look

Hi. I have my standard manual wheelchair from the NHS but I would like to buy an electric wheelchair as I get tired very quickly and dependent on others to...

Hi. I have my standard manual wheelchair from the NHS but I would like to buy an...

Lili986

•3 years ago

11 Replies

NHS England announces new Innovative Medicines Fund to fast-track promising new drugs

Just in case anyone hadn't seen this, https://www.england.nhs.uk/2021/07/nhs-england-announces-new-innovative-medicines-fund-to-fast-track-promising-new-drugs/

Just in case anyone hadn't seen this, https://www.england.nhs.uk/2021/07/nhs-eng...

edfosho

•3 years ago

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Anxiety disorder

Picture yourself in a lions den, or on the edge of a cliff, and try to imagine how difficult it would be to feel calm and free from anxiety and stress. In...

Picture yourself in a lions den, or on the edge of a cliff, and try to imagine h...

sotired67

•3 years ago

6 Replies

Making life easier for disabled people

The Secretary of State for Work and Pensions, Thérèse Coffey, announced the government's £1.6bn strategy to improve the lives of disabled people. So far, the...

The Secretary of State for Work and Pensions, Thérèse Coffey, announced the gov...

sotired67

•3 years ago

1 Reply

Life Insurance / funeral plan

Does anyone have any advice on either. I am 36 and struggling to find cover with ataxia.

Does anyone have any advice on either. I am 36 and struggling to find cover with...

Sherena

•3 years ago

12 Replies

nightsweat

For quite a few years, I've woken up in the morning (as was the case earlier) and found that my chest and groin area were soaked with sweat. My entire body...

For quite a few years, I've woken up in the morning (as was the case earlier) a...

sotired67

•3 years ago

5 Replies

Swimming

Does anyone know if there is any help with swimming my son can go to and who would I get in touch with for help

Does anyone know if there is any help with swimming my son can go to and who wou...

Bearbonny

•3 years ago

9 Replies

Crowd sourcing disease data website

https://www.stuffthatworks.health/spinocerebellar-ataxia/join

nycgeordie

•3 years ago

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Walking sticks with foldaway seats

Hey all, Does anyone have buying advice for walking sticks with foldaway seats? E.g. recommendations, things to look for / avoid, etc. Upon a quick search, I...

Hey all, Does anyone have buying advice for walking sticks with foldaway seats? ...

edfosho

•3 years ago

5 Replies

Mobility equipment insurance

Does anyone have any recommendations for insurance company’s that cover mobility equipment when taken abroad / on flights. We have an nhs provided manual chair...

Does anyone have any recommendations for insurance company’s that cover mobility...

crackerwest

•3 years ago

6 Replies

Info

Hello all Some of you will know this but there’s a chap called Professor Henry Houlden who works at Queens Square Hospital in London he is head of a genetics...

Hello all Some of you will know this but there’s a chap called Professor Henry H...

paul456

•3 years ago

4 Replies

LDN

Hi, has anyone been taking a drug called LDN - naltrexone?

Mirabella113

•3 years ago

1 Reply

Travel is not all about holidays.

There probably are several people on this site who have family overseas. Our adult children all live in other countries and because of this pandemic we have...

There probably are several people on this site who have family overseas. Our adu...

klazien

•3 years ago

4 Replies

Fighting ataxia.

Friends, fight it, fight it, fight it, Don't let it beat you. Laugh at it, smile at the storm, and fight. It's all we have left.

Friends, fight it, fight it, fight it, Don't let it beat you. Laugh at it, smile...

smiling1

•3 years ago

7 Replies

Ataxia and football

Ataxia or not, half the nation were watching last night. I'd like to know what the other half were doing. PS I'm new here

Ataxia or not, half the nation were watching last night. I'd like to know what t...

smiling1

•3 years ago

9 Replies

Trionic velapod sport rollator

Good evening any help would be appreciated. Does anybody have any experience of the Trionic Velapod Sport rollator. I am thinking of buying one, but they are...

Good evening any help would be appreciated. Does anybody have any experience of ...

Jimbob7492

•3 years ago

17 Replies

SLURRED SPEECH

I really struggle with my speech can any1 help

SHIVAJI29

•3 years ago

7 Replies

Walker for better balance 2

I would like to update all - I spoke with my consultant and GP and they have given me referral for physio to advise me on what walker to buy. Let's see what...

I would like to update all - I spoke with my consultant and GP and they have giv...

Amynah

•3 years ago

5 Replies

Sources to try for help getting disability grants in the UK

If you live in the UK, and need pointing in the right direction to access help in getting disability grants.. See www.disability-grants.org

If you live in the UK, and need pointing in the right direction to access help i...

wobblybee

•3 years ago

1 Reply

Second AZ vaccine and little side effects!

For me the first AZ vaccination caused many side effects plus worsening of ataxia symptoms. Some of you may have read my previous post on this issue. BUT the...

For me the first AZ vaccination caused many side effects plus worsening of ataxi...

penelope2

•3 years ago

5 Replies

Free Money

Please see link below....

paul456

•3 years ago

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Gluten ataxia

Hi I’m Guy I’ve been suffering with ataxia for years, I recently had a lumbar puncture and endoscopy at Sheffield under Dr Marios he said I have an antibody to...

Hi I’m Guy I’ve been suffering with ataxia for years, I recently had a lumbar pu...

Guyb

•3 years ago

7 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for July 2021

Query on possible Cognitive regression SCA 19/ 22

Diagnosis

Meds

Whole Genome Testing

New wheelchair - where to look

NHS England announces new Innovative Medicines Fund to fast-track promising new drugs

Anxiety disorder

Making life easier for disabled people

Life Insurance / funeral plan

nightsweat

Swimming

Crowd sourcing disease data website

Walking sticks with foldaway seats

Mobility equipment insurance

Info

LDN

Travel is not all about holidays.

Fighting ataxia.

Ataxia and football

Trionic velapod sport rollator

SLURRED SPEECH

Walker for better balance 2

Sources to try for help getting disability grants in the UK

Second AZ vaccine and little side effects!

Free Money

Gluten ataxia

Search posts

Latest poll

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

Topics

Archive