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PSP Association

9,922 members•11,734 posts

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YES to PSP awareness

PSP Awareness - Does it matter? YES!!! - https://wp.me/pdiVe1-1fI

PSP Awareness - Does it matter? YES!!! - https://wp.me/pdiVe1-1fI

•1 day ago

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view on time

A very interesting and possibly unexpected view on time - https://fightingparkinsonss.com/2025/03/24/times/

A very interesting and possibly unexpected view on time - https://fightingparkin...

•2 days ago

PSP and hospitalisation

My partner was diagnosed with psp March 24 but had been living well with this condition for several years before that. Eating well and keeping a consistent...

My partner was diagnosed with psp March 24 but had been living well with this c...

•2 days ago

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blogging

Makes blogging worth it - what an important message for me to hear -https://fightingparkinsonss.com/2025/03/23/makes-blogging-worthwhile/

Makes blogging worth it - what an important message for me to hear -https://figh...

•3 days ago

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REENERGIZED

Lots to look forward to and to be grateful for alongside the pain and suffering. Hope all have a good week!!! https://fightingparkinsonss.com/2025/03/22/faith/...

Lots to look forward to and to be grateful for alongside the pain and suffering....

•4 days ago

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survey on quality care for rare disease

Hi all I have just completed this survey that aims to define what high-quality, sustainable care, treatment, and management should look like for rare diseases....

Hi all I have just completed this survey that aims to define what high-quality, ...

•4 days ago

The end

Just to say that my husband died yesterday morning from PSP. It's been a hard road but it's over now. He had been hospitalised with pneumonia and only able to...

Just to say that my husband died yesterday morning from PSP. It's been a hard r...

•4 days ago

Dignity

Dignity - perhaps selfish but many people feel it so it is important to state - https://fightingparkinsonss.com/2025/03/21/dignity-my-fear-and-my-action-plan/...

Dignity - perhaps selfish but many people feel it so it is important to state - ...

•5 days ago

CHC funding

Thankyou for your replies . Actually , I may have misled you . It was the DST meeting which we had two months ago . Not a review . I spent the whole of Xmas...

Thankyou for your replies . Actually , I may have misled you . It was the DST ...

•6 days ago

Moving into place in bed

After receiving the Mo Lift last week I was so relieved as it has made moving my husband to the side of the bed a lot easier. However he cannot help himself to...

After receiving the Mo Lift last week I was so relieved as it has made moving my...

•7 days ago

CHC funding

We had our review 3 months ago . It was so stressful ! It seemed as if the Nurse Assessor was determined to downgrade our needs despite the views of the three...

We had our review 3 months ago . It was so stressful ! It seemed as if the Nurse...

•7 days ago

From Giving to Receiving:

From Giving to Receiving: Accepting Help in My Fight Against Disease - https://wp.me/pdiVe1-1dW

From Giving to Receiving: Accepting Help in My Fight Against Disease - https://w...

•7 days ago

CHC Funding - Success

I only posted last week to say how anxious I was about our meeting for a DST assessment. Well it took almost 3 hrs of discussion and observations which left...

I only posted last week to say how anxious I was about our meeting for a DST ass...

Licquoricelover

•8 days ago

Therapy

Therapy - a very important hour where I actually found huge benefit, despite never having embraced the concept - this was too big not to....

Therapy - a very important hour where I actually found huge benefit, despite nev...

•8 days ago

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PSP - some trivia from a sufferer

I thought I’d better put a comment on me being a sufferer as I know it would be easy to offend in just using the word trivia in a sentence about PSP. Anyway,...

I thought I’d better put a comment on me being a sufferer as I know it would be ...

•9 days ago

incontinence

Hi all. Mum has worsened recently after a viral infection - she now has little/ no bladder control & some pain. She’s on permanent low dose antibiotics &...

Hi all. Mum has worsened recently after a viral infection - she now has little/...

•9 days ago

PSP and Dementia

my mam was diagnosed in Feb 23, she has been stable since then. Everything changed 3 weeks ago, she is now confused and is very confused about time, could this...

my mam was diagnosed in Feb 23, she has been stable since then. Everything chang...

•9 days ago

Laughter

For me laughter is proving itself the best medicine and it is not a question of laughing or crying - it is both - and that is what makes it such a positive...

For me laughter is proving itself the best medicine and it is not a question of ...

•9 days ago

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It's okay

It's okay - I also don't quite know what to say.... -fightingparkinsonss.com/2025/03/16/its-okay/

It's okay - I also don't quite know what to say.... -fightingparkinsonss.com/20...

•10 days ago

velvet bean supplements

Has anyone tried velvet beans or velvet bean supplements as they are supposed to boost dopamine levels. If so, what was your experience of them. Many thanks...

Has anyone tried velvet beans or velvet bean supplements as they are supposed to...

ChocolateFlowers

•10 days ago

Recent PSP diagnosis

Hi all my mum was diagnosed with PSP last week after a few years of falling and other issues. Over the past month since seeing a physio, she has only fallen...

Hi all my mum was diagnosed with PSP last week after a few years of falling and...

ChocolateFlowers

•10 days ago

Am I scared?

Am I scared? A pretty fundamental question - a + answer despite some real fears - https://fightingparkinsonss.com/2025/03/15/am-i-scared/

Am I scared? A pretty fundamental question - a + answer despite some real fears ...

•11 days ago

Faces and Voices PSP-CBD, MSA and DLB Awareness

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DmMHoU0BI0jw%26fbclid%3DIwZXh0bgNhZW0CMTEAAR34tP5clNgp25ddoIMPShuHIGU5C4F5l2-H3pxQtXw7

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DmMHoU...

•13 days ago

Group Meeting Shropshire

is there anyone on here going to the group meeting in Shropshire on 26th March. Ive never been to a meeting before. We are not local to Shropshire, but being...

is there anyone on here going to the group meeting in Shropshire on 26th March. ...

•13 days ago

Some comfort

Some signs of comfort and dare I say it some hope (at least maybe :-)) https://fightingparkinsonss.com/2025/03/11/comfort/

Some signs of comfort and dare I say it some hope (at least maybe :-)) https://f...

•15 days ago

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Research needed for Vertical and Horizontal Eye Movements Problems in PSP ; PSP Associations must act urgently

People with PSP have eye movement problems with looking up and down. These develop in the beginning or later on as the disease progresses. Inability to focus...

People with PSP have eye movement problems with looking up and down. These deve...

•16 days ago

24 hours just a boring day

It seemed like such a normal dare I say it boring 24 hours - https://fightingparkinsonss.com/2025/03/10/24-hours/

It seemed like such a normal dare I say it boring 24 hours - https://fightingpar...

•16 days ago

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recent diagnosis

Hi all. my 82 year old mum had been having niggly issues I took her to the GP for, for about 5 years (I now believe they were the first symptoms, then 2 years...

Hi all. my 82 year old mum had been having niggly issues I took her to the GP fo...

ChocolateFlowers

•16 days ago

DST Assessment

I have the DST assessment for my husband this Thursday which has completely surprised me at how quickly this is happening given our social worker only...

I have the DST assessment for my husband this Thursday which has completely surp...

Licquoricelover

•17 days ago

L'Chaim - To Life

A very creative alcoholic experiment saves the day and helps me refocus for a better week focusing on living - so to all I say ‘L’Chaim / To Life’...

A very creative alcoholic experiment saves the day and helps me refocus for a be...

•18 days ago

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