Posts - PSP Association | HealthUnlocked

PSP Association

9,334 members • 11,388 posts

All posts for February 2023

Speech and Language team in the UK

Just an update on my wife (Jackie, diagnosed since 29th Jan 23) and her PSP path, she had a visit from the Speech and Language therapy team yesterday and it's...

Just an update on my wife (Jackie, diagnosed since 29th Jan 23) and her PSP path...

•1 year ago

February Is Worldwide Rare Disease Month

February is Worldwide Rare Disease Month and February 28th is Worldwide Rare Disease Day. #WhatsYourRare https://www.youtube.com/watch?v=cqdaXe_Y-ys&t=27s...

February is Worldwide Rare Disease Month and February 28th is Worldwide Rare Dis...

•1 year ago

A Sneak Peek Into The 2023 Ice Cream Challenge for PSP & CBD

In time for Valentine's Day. Milk chocolate heart bowl line filled with white chocolate, whipped cream, milk and white chocolate hearts, two scoops of...

In time for Valentine's Day. Milk chocolate heart bowl line filled with white c...

•1 year ago

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lip biting or jaw clenching problems?

hi everyone, I was wondering if you’ve had any experience with your family members with PSP in later stages biting their lips or clenching their jaws to the...

hi everyone, I was wondering if you’ve had any experience with your family memb...

•1 year ago

gone but not forgotten

finally mum released from this horrible psp, never heard of it until she got diagnosed aspiration pneumonia finally got her, of course im heartbroken but i...

finally mum released from this horrible psp, never heard of it until she got dia...

•1 year ago

It is that time.

The old bag has finally been released. After fourteen ish years of the fight she was peaceful and happy. Thanking you for the support.

The old bag has finally been released. After fourteen ish years of the fight she...

•1 year ago

Continuing Healthcare

Hi all. Just wondering if anyone on here that has CBD or a loved one with the condition has been refused continuing healthcare funding. We’re currently...

Hi all. Just wondering if anyone on here that has CBD or a loved one with the co...

•1 year ago

Getting the best carers

I live in the North East of England we are CHC FUNDED I AM NOT HAPPY WITH CARE COMPANY CAN ANYONE RECOMMEND COMPANY THAT UNDERSTANDS PSP

I live in the North East of England we are CHC FUNDED I AM NOT HAPPY WITH CA...

•1 year ago

Struggling to get comfortable when sleeping

Hello all, my wife is exhausted and 1) She's scared to sleep in case she doesn't wake up and 2) The pain in her neck and shoulders from lying down. Now we've...

Hello all, my wife is exhausted and 1) She's scared to sleep in case she doesn't...

•1 year ago

very rapid decline

about two days ago my partner suddenly stopped being able to swallow or communicate. Tonight she has rolled into a foetal position and if I try to move her her...

about two days ago my partner suddenly stopped being able to swallow or communic...

•1 year ago

Worldwide Rare Disease Month

February is Worldwide Rare Disease month, culminating in Worldwide Rare Disease Day on February 28th. A blast from the past......

February is Worldwide Rare Disease month, culminating in Worldwide Rare Disease ...

•1 year ago

My wife has just been diagnosed, got a few questions if possible please.

Hello, my wife had just been diagnosed with PSP on Sunday last week. It's been a bit of a blur TBH and we're awaiting our Neurologist to write to our G.p with...

Hello, my wife had just been diagnosed with PSP on Sunday last week. It's been a...

•1 year ago

Double vision

Hi everyone, have been reading posts on this site for a while and found them very helpful with everything from medication to equipment, so thanks so much for...

Hi everyone, have been reading posts on this site for a while and found them ver...

•1 year ago

sleep

anyone experienced long periods of sleep, i care for my mother im on a massive emotional rollercoster no 2 days the same we had restless nights agitation...

anyone experienced long periods of sleep, i care for my mother im on a massive e...

•1 year ago

PSP is dreadful. I’m not “giving up.” I’m giving in.

Hello, all. Patient here. I’ve been wanting to write this post for some time, but I haven’t known how to open this conversation. I’ve decided to let PSP run...

Hello, all. Patient here. I’ve been wanting to write this post for some time, bu...

•1 year ago

Falls

My father in law has PSP diagnosed in March 2020.When he falls he never feels pain, even when he cut his head and went to hospital. Is this part of the PSP...

My father in law has PSP diagnosed in March 2020.When he falls he never feels pa...

•1 year ago

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