Posts - PSP Association | HealthUnlocked

PSP Association

9,728 members•11,604 posts

All posts for February 2023

does anyone have trouble being believed

in the area where i live no one seems to understand what psp is. my neurologist here had his supicious but could not diagnose for sure, so i had to go to...

in the area where i live no one seems to understand what psp is. my neurologist ...

•2 years ago

February 28th is Worldwide Rare Disease Day

https://youtu.be/zfKmdm7j5X4

https://youtu.be/zfKmdm7j5X4

•2 years ago

spasms

I have been having very severe spasm and pain in both of my legs the past two nights, the worst I have experienced to date. I am on muscle relaxants and...

I have been having very severe spasm and pain in both of my legs the past two ni...

•2 years ago

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Imagine - Re-Imagined February is Worldwide Rare Disease Month

New Link: https://youtu.be/-P6PelX_M-M Tim

New Link: https://youtu.be/-P6PelX_M-M Tim

•2 years ago

February is Worldwide Rare Disease Month Imagine - Re-Imagined

Imagined - Re-imaginedhttps://www.youtube.com/watch?v=-P6PelX_M-M

Imagined - Re-imaginedhttps://www.youtube.com/watch?v=-P6PelX_M-M

•2 years ago

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PSP “ offered”me one-day lull - just one day!

Hi, Everyone!Some weeks ago I wake up in the morning without feeling any of the symptoms of PSP. No freezing of gait, nothing. I felt myself a completely new...

Hi, Everyone!Some weeks ago I wake up in the morning without feeling any of the ...

•2 years ago

PSP-CBD Awareness

Meet Jack and Stan, a pair of legs, doing the best that they can. https://youtu.be/eLQBslbbTl8

Meet Jack and Stan, a pair of legs, doing the best that they can. https://youtu...

•2 years ago

PSP-CBD Awareness

Meet Jack and Stan, a pair (my pair) of legs, doing the best that they can. https://www.youtube.com/watch?v=eLQBslbbTl8&t=27s

Meet Jack and Stan, a pair (my pair) of legs, doing the best that they can. htt...

•2 years ago

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PSPA meet up East Midlands

The PSPA have a new face to face meeting at Leicester on Saturday, 4 March. Anyone on here considering going? It would be nice to put a few faces to the names

The PSPA have a new face to face meeting at Leicester on Saturday, 4 March. Any...

•2 years ago

Silent Aspiration? Chest Infection

My mother is 86. She began exhibiting PSP symptoms in 2015 and now has a PEG tube to receive all medicines and nourishment. She appears to be very...

My mother is 86. She began exhibiting PSP symptoms in 2015 and now has a PEG tub...

•2 years ago

Stress

Strange questions but hoping someone knows ……does anyone know if stress can exasperate PSP, and does more talking improve the voice

Strange questions but hoping someone knows ……does anyone know if stress can exas...

•2 years ago

Jaw not moving

Hello to all!! My loved one is late to final stages with PSP. The last few days almost a week her lower jaw dosen't have any or very little movement. She...

Hello to all!! My loved one is late to final stages with PSP. The last few days ...

Stephanielayell82

•2 years ago

Nursing/Care Home

I recently posted about my dilemma with putting Mum (72 with PSP) in a care home. We've been looking at potential homes with Mum, but some just offer...

I recently posted about my dilemma with putting Mum (72 with PSP) in a care home...

•2 years ago

Behavioural changes first in PSP

Hey, my mum was diagnosed with PSP in 2021, she was 68. Prior to diagnosis we were convinced mum had frontotemporal dementia because it was her behavourial...

Hey, my mum was diagnosed with PSP in 2021, she was 68. Prior to diagnosis we we...

•2 years ago

Continuing Healthcare Query

Hi all Just wondered if anyone can explain to me the difference between a continuing healthcare assessment and a fast tracked continuing healthcare...

Hi all Just wondered if anyone can explain to me the difference between a conti...

•2 years ago

February Is Worldwide Rare Disease Month

Parody Lyric PSP Mornin' Comin' Down... round 2...

Parody Lyric PSP Mornin' Comin' Down... round 2...

•2 years ago

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February is Worldwide Rare Disease Month

PSP Mornin' Comin' Down https://www.youtube.com/watch?v=Ye8K9VfHIJ4&list=PLMLJq1lOP77FB2g57lus1Rm3gyVW5FEqq Tim

PSP Mornin' Comin' Down https://www.youtube.com/watch?v=Ye8K9VfHIJ4&list=PLMLJq...

•2 years ago

Night Time Waking

My husband has PSP and since Christmas has been constantly waking up in the night calling out to me. Sometimes I’m up 4-5 times with him just for little...

My husband has PSP and since Christmas has been constantly waking up in the nigh...

•2 years ago

Actor Bruce Willis has received a further diagnosis of FTD - frontotemporal dementia

FTD - frontotemporal dementia is an umbrella term to include neurological diseases like PSP and CBD. I came up with a revised set of parody lyrics of the...

FTD - frontotemporal dementia is an umbrella term to include neurological diseas...

•2 years ago

A huge THANK YOU

I posted a plea for help/question a few days ago and I just want to thank you all for the help and support in your answers, it’s been heartbreaking to read...

I posted a plea for help/question a few days ago and I just want to thank you al...

•2 years ago

Chicago Med Series 8 Episode 2

Hi everyone, we are MASSIVE fans of Chicago Med and in one of the latest episodes a patient has MND/ALS (and I know we're all here for PSP/CBD), now he has a...

Hi everyone, we are MASSIVE fans of Chicago Med and in one of the latest episode...

•2 years ago

Catheters!!!!

Major rant 🤬🤬🤬. Is anyone having any issues with catheter bags not staying attached to the Catheter itself? I am having to reattach the bag at least 3 times...

Major rant 🤬🤬🤬. Is anyone having any issues with catheter bags not staying at...

•2 years ago

Advice

my mam has just been diagnosed with PSP, she has had symptoms for about 4 years, she already walks with a walker, very badly, and chocking is a problem when...

my mam has just been diagnosed with PSP, she has had symptoms for about 4 years,...

•2 years ago

February is Worldwide Rare Disease Month, February 28th is Worldwide Rare Disease Day

https://youtu.be/ZlfmAtjZexY

https://youtu.be/ZlfmAtjZexY

•2 years ago

February is Worldwide Rare Disease Month, February 28th is Worldwide Rare Disease Day

https://www.youtube.com/watch?v=cqdaXe_Y-ys&t=142s

https://www.youtube.com/watch?v=cqdaXe_Y-ys&t=142s

•2 years ago

a CHC report.

I have just found out that the report was sent by email on 30 August 22 they knew it had failed but did not send a paper copy so I have no details to appeal....

I have just found out that the report was sent by email on 30 August 22 they kne...

•2 years ago

Move to care home

My 72 year Mum who was diagnosed with PSP in March 2021 was admitted to hospital in January with pneumonia. After a two week stay, she was discharged to a...

My 72 year Mum who was diagnosed with PSP in March 2021 was admitted to hospital...

•2 years ago

preparing for CHC MDT

This is my first post and I’m hoping for some advice on preparing for a MDT meeting for my mum who has PSP (plus depression, diabetes, high BP, cognitive...

This is my first post and I’m hoping for some advice on preparing for a MDT meet...

•2 years ago

Dad - CBD

So the last few days my dad has been poorly. His breathing hasn't been very good and he has been making awful noises. He is now struggling to swallow so sits...

So the last few days my dad has been poorly. His breathing hasn't been very good...

•2 years ago

Physio and CBD

hi. My mum (81) has CBD, diagnosed December 2019 but had symptoms for about 3/4 years before. Due to lockdown and other circumstances, she’s just started to...

hi. My mum (81) has CBD, diagnosed December 2019 but had symptoms for about 3/4 ...

•2 years ago

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