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PSP Association

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All posts for May 2021

The end seems close

Mike is now bed bound. We moved the hospital bed to the living room and the hospice nurse is visiting daily. He has been prescribed liquid morphine and is not...

Mike is now bed bound. We moved the hospital bed to the living room and the hosp...

Caro2132

•4 years ago

22 Replies

Video Monitoring Advice

My husband has PSP and is now downstairs living with an electric hospital bed. Could I ask what video monitors or night time aids members use please? We...

My husband has PSP and is now downstairs living with an electric hospital bed. ...

Sparkycat

•4 years ago

6 Replies

Hello

Hi there, I’ve not posted here before. My Mum has CBD, moderate stages now and seems to be declining weekly. I’m petrified what potentially lays ahead for her,...

Hi there, I’ve not posted here before. My Mum has CBD, moderate stages now and s...

NetballMagic

•4 years ago

7 Replies

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Advance Care Plan (ACP) info and Night Time Risks & supervision advice please

Hi All, Hospital sagas continue as my Dad, following second aspiration, is now in week four of his hospital admission. We're trying to break the cycle and get...

Hi All, Hospital sagas continue as my Dad, following second aspiration, is now ...

Red6875

•4 years ago

10 Replies

Updated GP Guide available

Help improve the support and care people with PSP & CBD receive from their GP, by sharing our Guide to PSP & CBD for GP’s and the Primary Healthcare Team, with...

Help improve the support and care people with PSP & CBD receive from their GP, b...

HelenPSPA

Administrator•4 years ago

1 Reply

New improvements… I’m confused

Hi everyone. New developments on this side of the world… on my last post, I was asking you about the idea of a PEG… they have the idea, as an emergency...

Hi everyone. New developments on this side of the world… on my last post, I was...

cayabrewer

•4 years ago

2 Replies

Memantine

Hello all Has anyone else been prescribed memantine please ?

Northstar1

•4 years ago

18 Replies

Red Flag the signs and symptoms of PSP & CBD

To ensure more people can spot the signs and symptoms of PSP & CBD, we've recently updated our useful Red Flag posters. The posters are designed to help GPs...

To ensure more people can spot the signs and symptoms of PSP & CBD, we've recent...

HelenPSPA

Administrator•4 years ago

4 Replies

PSP & CBD Awareness Week 2021

Today marks the beginning of the 2021 PSP & CBD Awareness Week. We hope you will join us during the week as we aim to make more people aware of the signs and...

Today marks the beginning of the 2021 PSP & CBD Awareness Week. We hope you will...

HelenPSPA

Administrator•4 years ago

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No Question, just sadness and exhaustion

After 13 days without food or water, my courageous mother peacefully passed away. She had aspiration pneumonia and a compacted bowel due to constipation....

After 13 days without food or water, my courageous mother peacefully passed away...

Goroos

•4 years ago

22 Replies

Communication Aids

Hi All. We have reached the PSP stage where My Margaret can only speak in a very quiet slurred way and is almost incomprehensible. I have been looking at...

Hi All. We have reached the PSP stage where My Margaret can only speak in a very...

Birdman42

•4 years ago

18 Replies

Hello Friends

This smile is what I captured this morning, before she went back down to sleep. Momma is sleeping more than she is awake, and my heart is breaking a little...

This smile is what I captured this morning, before she went back down to sleep. ...

bazooka111

•4 years ago

46 Replies

PSP & CBD Awareness Week begins 24 May

PSP & CBD Awareness Week begins on Monday! To help you gear up for the week, here are our intended activities each day between 24 and 30 May. We hope you will...

PSP & CBD Awareness Week begins on Monday! To help you gear up for the week, her...

HelenPSPA

Administrator•4 years ago

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PSP and cbd

Does anyone know if the two conditions psp and cbd are linked to iron deficiency anemia

Does anyone know if the two conditions psp and cbd are linked to iron deficienc...

Rangers55champions

•4 years ago

12 Replies

My funny little invention

My mother spends a lot of time on the toilet and recently I discovered that, because she has poor muscle tone and can’t change position, she got a deep, red...

My mother spends a lot of time on the toilet and recently I discovered that, bec...

Martina_MP

•4 years ago

12 Replies

The Ice Cream Challenge for PSP-CBD 2021

The Ice Cream Challenge for PSP-CBD 2021 https://youtu.be/N_ECo4K8PQw via @YouTube My latest and arguably greatest creation yet. Click on the address to see...

The Ice Cream Challenge for PSP-CBD 2021 https://youtu.be/N_ECo4K8PQw via @YouT...

daddyt

•4 years ago

6 Replies

Updated and Conflicted

Hi all, It's been a while since I've posted, but I'm afraid we have come to the point where Mom needs Assisted Living. Here's the main issue... I didn't want...

Hi all, It's been a while since I've posted, but I'm afraid we have come to the ...

ARutzen

•4 years ago

10 Replies

PSP & CBD Awareness Week

There is just one week to go before our PSP & CBD Awareness Week activities begin! You love sharing our Red Flag posters and next week we will be providing a...

There is just one week to go before our PSP & CBD Awareness Week activities begi...

HelenPSPA

Administrator•4 years ago

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Frustration

Hey people, So my mum has psp,diagnosed 18months ago but I believe she had symptoms a few years before this . In 2017 she fell backwards down the stairs and...

Hey people, So my mum has psp,diagnosed 18months ago but I believe she had sympt...

Tillytott54

•4 years ago

5 Replies

It will run it's course

These are the last semi-coherent words Ian spoke to the GP a couple of days before he passed away in his sleep in the early hours of Friday morning. He had...

These are the last semi-coherent words Ian spoke to the GP a couple of days befo...

JCRy

•4 years ago

20 Replies

AllStripes and Research

AllStripes will even collect medical records of loved ones who have finished their journey. De-identified medical records can help further research into a...

AllStripes will even collect medical records of loved ones who have finished the...

daddyt

•4 years ago

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Atropine eye drops for coughing and excess Sylvia

Hi Everyone I researched what I could get for my husbands excess Sylvia and I found this asked my doctor twice for it but to no avail Now he’s in the...

Hi Everyone I researched what I could get for my husbands excess Sylvia and I f...

Dance1955

•4 years ago

6 Replies

So unexpected

My lovely husband died last week. He was admitted to hospital with suspected aspiration pneumonia, which they said they had caught early. After 5 days, in...

My lovely husband died last week. He was admitted to hospital with suspected as...

Gemmadog

•4 years ago

36 Replies

Hard decisions

Hello to all!! What a horrible thing we are faced with watching our loved ones battling this disease. My loved one for about a couple of months now mentions...

Hello to all!! What a horrible thing we are faced with watching our loved ones b...

Stephanielayell82

•4 years ago

16 Replies

Share your ideas for PSPA Matters articles

We would love to have any ideas you have for articles you would like to read in upcoming editions of PSPA Matter. You can share any ideas or your own personal...

We would love to have any ideas you have for articles you would like to read in ...

HelenPSPA

Administrator•4 years ago

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The Ice Cream Challenge for PSP-CBD

TimTam BAM! for two TimTams' Caramel, marshmallow fluff, French Vanilla ice cream, peanuts, Smucker's Magic Shell whipped cream and caramel sauce. Enjoy. Think...

TimTam BAM! for two TimTams' Caramel, marshmallow fluff, French Vanilla ice crea...

daddyt

•4 years ago

5 Replies

The Ice Cream Challenge for PSP-CBD

Rocky Road - Klondike Bar, marshmallow fluff, O'Henry Bites and Smucker's Magic Shell. Enjoy. #icecreamchallengeforpspcbd

Rocky Road - Klondike Bar, marshmallow fluff, O'Henry Bites and Smucker's Magic ...

daddyt

•4 years ago

4 Replies

Can I know what mom is feeling?

Hello, I always have a question on my mind which is my mother is having PSP how can I know her feelings from inside, what does she feel? Her pain and...

Hello, I always have a question on my mind which is my mother is having PSP how ...

Blueclouds07

•4 years ago

5 Replies

Using canabidiol to treat PSP?

Did anyone tried using high doses of CBD oil. I have read few abstracts and conclusions of scientific papers which suggest that CBD could be very beneficial...

Did anyone tried using high doses of CBD oil. I have read few abstracts and conc...

jiri_jiri

•4 years ago

6 Replies

Christine's Captain Tom Challenge is complete

Congratulations to Christine Harrison who on Friday completed her Captain Tom Challenge for PSPA. Christine has been using a handcycle to help improve her arm...

Congratulations to Christine Harrison who on Friday completed her Captain Tom Ch...

HelenPSPA

Administrator•4 years ago

1 Reply

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for May 2021

The end seems close

Video Monitoring Advice

Hello

Advance Care Plan (ACP) info and Night Time Risks & supervision advice please

Updated GP Guide available

New improvements… I’m confused

Memantine

Red Flag the signs and symptoms of PSP & CBD

PSP & CBD Awareness Week 2021

No Question, just sadness and exhaustion

Communication Aids

Hello Friends

PSP & CBD Awareness Week begins 24 May

PSP and cbd

My funny little invention

The Ice Cream Challenge for PSP-CBD 2021

Updated and Conflicted

PSP & CBD Awareness Week

Frustration

It will run it's course

AllStripes and Research

Atropine eye drops for coughing and excess Sylvia

So unexpected

Hard decisions

Share your ideas for PSPA Matters articles

The Ice Cream Challenge for PSP-CBD

The Ice Cream Challenge for PSP-CBD

Can I know what mom is feeling?

Using canabidiol to treat PSP?

Christine's Captain Tom Challenge is complete

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive