Posts - PSP Association | HealthUnlocked

PSP Association

9,925 members•11,741 posts

All posts for March 2025

Caregiver Burnout

A great read:...

A great read:...

•23 hours ago

toilet frame recommendation

Hi, this is a very practical question- can anyone please recommend a very sturdy toilet frame? We have an NRS toilet frame which has been good up until now,...

Hi, this is a very practical question- can anyone please recommend a very sturd...

•1 day ago

brandysuki

thanks for your helpful replies everyone re my wife’s right side leaning. She is also now having very great difficulty in walking, both her feet/legs keep...

thanks for your helpful replies everyone re my wife’s right side leaning. She is...

•1 day ago

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Rest versus Guilt

As I am forced to rest I truly can’t help feeling guilty - I must fight this because rest is one of my only weapons as no treatment exists but it is still a...

As I am forced to rest I truly can’t help feeling guilty - I must fight this bec...

•1 day ago

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brandysuki

is leaning sideways one of the PSP symptoms?

is leaning sideways one of the PSP symptoms?

•2 days ago

100% diagnosis?

Why a 100% definitive diagnosis would not actually make a difference to me as a person. https://fightingparkinsonss.com/2025/03/27/psp-not-100/

Why a 100% definitive diagnosis would not actually make a difference to me as a ...

•3 days ago

Lost his battle

Christopher Bruton. My husband of 52 yrs lost his battle with PSP and Dementia 28th FEB he fought hard and we will miss him terrible.. he was cared for a...

Christopher Bruton. My husband of 52 yrs lost his battle with PSP and Dementia ...

•3 days ago

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

•4 days 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...

•5 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...

•5 days ago

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...

•6 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....

•7 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, ...

•7 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...

•7 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 - ...

•8 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 ...

•9 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...

•10 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...

•10 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...

•10 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

•11 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...

•11 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 ...

•12 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/...

•12 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...

•12 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 ...

•12 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...

•13 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

•13 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

•13 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 ...

•14 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...

•16 days ago

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