Posts - PSP Association | HealthUnlocked

PSP Association

9,493 members • 11,488 posts

Sort posts by:

Hi newbie here so please be gentle. I was recently diagnosed with PSP

I'm only 66 and have had no real issues up till now - speech maybe rather quiet and slurred. But the last couple of days have had a really sore right foot...

I'm only 66 and have had no real issues up till now - speech maybe rather quiet...

Scotty1234

•6 hours ago

2 Replies

Still here... just.

I got a call this morning from the home. Here now, mum is on the pathway, so I'm hoping she finds peace soon x

I got a call this morning from the home. Here now, mum is on the pathway, so I'm...

MRSYafffle

•2 days ago

10 Replies

Sudden Impulsiveness

Good morning, My husband was diagnosed with PSP in October 2021. His speech and mobility are really bad. He recently had a super pubic catheter fitted due to...

Good morning, My husband was diagnosed with PSP in October 2021. His speech and...

Positivevibe21

•4 days ago

8 Replies

Want to take advantage of all our features? Just log in!

PSP and the end

My mum is getting worse, neurologist said in final stages. Mum lives in aged care and requires assistance for everything. She rings bell on averages 6 times a...

My mum is getting worse, neurologist said in final stages. Mum lives in aged car...

mumnme

•7 days ago

12 Replies

Still here ...

We are still here, frailer and sadder. Lost count of the number of chest infections since the last post. She usually responds to antibiotics but hasn't this...

We are still here, frailer and sadder. Lost count of the number of chest infecti...

MRSYafffle

•7 days ago

6 Replies

Peace

Sadly, Mum is no longer here but at rest and free from the vile PSP. In the end, death was very peaceful and not a lingering one and for that I am extremely...

Sadly, Mum is no longer here but at rest and free from the vile PSP. In the end...

Doublereeder

•8 days ago

8 Replies

Grief is my middle name

Follows me through ebbs and flow A constant companion on the road A dark shadow behind Enveloping me in sweet embrace Come closer my darling He whispers...

Follows me through ebbs and flow A constant companion on the road A dark shado...

Warrioragainstpsp

•9 days ago

2 Replies

My dad 1

So sorry to hear of your loss 💙

Pinkcamelia

•10 days ago

Be the first to reply

My dad

Hi , just thought I would post on here to let everyone know that my dad passed away early yesterday morning. He had PSP and liver cancer. He had loved ones...

Hi , just thought I would post on here to let everyone know that my dad passed a...

MyDad1

•10 days ago

52 Replies

severe reflux after PEG

my beautiful darling mum 74 years old, Diagnosed initially with atypical Parkinson’s 2022, and then last year was diagnosed with PSP , has rapidly deteriorated...

my beautiful darling mum 74 years old, Diagnosed initially with atypical Parkins...

Ammi-11

•11 days ago

2 Replies

This crazy disease

hi!… My sister was dx with PSP at age 79; she lived alone , no grown children, husband deceased for several years; she contacted me when she was in Rehab after...

hi!… My sister was dx with PSP at age 79; she lived alone , no grown children, h...

ckb4

•11 days ago

4 Replies

Priority setting partnership

This is a different PSP. There's a process called a Priority Setting Partnership where researchers work with patients and carers to identify important research...

This is a different PSP. There's a process called a Priority Setting Partnership...

messier

•15 days ago

4 Replies

Uncontrolled body temperature.

My wife has had PSP for six years, but over the last year she has suffered with uncontrolled body temps. She is always hot to the touch and sits around in her...

My wife has had PSP for six years, but over the last year she has suffered with ...

SEADIVER

•15 days ago

9 Replies

electrical sockets

Hello again, As mentioned before, we are having our garage converted to bedroom & wetroom. This is being done by the council. I want to try and make sure that...

Hello again, As mentioned before, we are having our garage converted to bedroom...

Pspuser

•15 days ago

11 Replies

Continued Health Care - provisioned care, or Personal Health Budget?

Hello again fellow travellers. I posted recently about our Continued Health Care (CHC) assessment - and today I had a telephone call confirming my husband has...

Hello again fellow travellers. I posted recently about our Continued Health Care...

Bergenser

•19 days ago

12 Replies

Our Story ….& why we’re fundraising for PSPA

Hello My daughter Alice has the privilege of being awarded a 2025 London Marathon charity place by PSPA. My husband was diagnosed with PSP two years ago...

Hello My daughter Alice has the privilege of being awarded a 2025 London Marath...

Bertieandpiper

•19 days ago

4 Replies

new to PSP

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in because I wasn’t showing regular signs of Parkinson’s have been to a movement...

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in becau...

Slyone

•21 days ago

Be the first to reply

new to PSP

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in because I wasn’t showing regular signs of Parkinson’s have been to a movement...

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in becau...

Slyone

•21 days ago

Be the first to reply

new to PSP

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in because I wasn’t showing regular signs of Parkinson’s have been to a movement...

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in becau...

Slyone

•21 days ago

2 Replies

Does anybody else suffer from keyboard mistakes?

I have been diagnosed with PSP. I would be interested whether anyone else suffers from a symptom I have, namely despite typing ever so slowly, I make many...

I have been diagnosed with PSP. I would be interested whether anyone else suffe...

MullerRice

•21 days ago

9 Replies

Barbara 71

Thank you for your lovely donation. Jess my granddaughter is running the London Marathon. For research into psp. Her Gramps died of it 8years. My heart goes...

Thank you for your lovely donation. Jess my granddaughter is running the London ...

Barbara71

•21 days ago

2 Replies

Missing Link

Finding HOPE everywhere. https://drive.google.com/file/d/1TzUWHWOzAdn-RQ4k4IJ_ikwKEF8UNwYZ/view?usp=drive_link RONWYN-3.mp4 Tim

Finding HOPE everywhere. https://drive.google.com/file/d/1TzUWHWOzAdn-RQ4k4IJ_i...

pspchronicles

•21 days ago

4 Replies

HOPE Is Everywhere And Anywhere

Five minutes of your time well spent. An Aussie friend and Advocacy and Support Committee member created this video for all connected past and present to the...

Five minutes of your time well spent. An Aussie friend and Advocacy and Support ...

pspchronicles

•21 days ago

3 Replies

CBD: Bedroom and bathroom conversion/adaption advice

My parents are currently converting the downstairs loo/shower into a wet room for my dear mum, who has CBD. The dining room will then be converted into her...

My parents are currently converting the downstairs loo/shower into a wet room fo...

PeterPanandLostBoys

•22 days ago

12 Replies

RotaBed - free to someone who would benefit

Although this is my first post, I have regularly used the forum as a source of information & taken comfort that we as a family were not alone. My beautiful &...

Although this is my first post, I have regularly used the forum as a source of i...

KathrynJ

•23 days ago

9 Replies

Psp and Lurasidone

My mum was diagnosed with PSP about a year ago but has had symptoms for several years. She is currently in a care home. She was put on Lurasidone as a result...

My mum was diagnosed with PSP about a year ago but has had symptoms for several ...

Artybex

•24 days ago

2 Replies

Elsternwick

I have PSP & am suffering with a painful back & right leg. Especaly at night or when I ie flat. Started before I had a bad bachwards fall. Is this common...

I have PSP & am suffering with a painful back & right leg. Especaly at night ...

elsternwick

•25 days ago

4 Replies

Supporting a loved one with psp

My dad was diagnosed with psp around 8 months ago (originally misdiagnosed as Parkinson’s). He is bed bound, can’t really speak anymore, and is very sleepy all...

My dad was diagnosed with psp around 8 months ago (originally misdiagnosed as Pa...

Fizz12

•26 days ago

5 Replies

Motability Car

Hi, My husband currently receives Attendance Allowance and I receive Carer’s Allowance. He has limited mobility and uses a wheelchair. I’ve been researching...

Hi, My husband currently receives Attendance Allowance and I receive Carer’s A...

Darlingtonian

•26 days ago

7 Replies

Thank you all

I want to thank everyone who replied to my post thank you all so much.

Morag1952

•1 month ago

Be the first to reply

Write a post or ask a question

Search posts

Latest poll

See all polls

What are your main concerns as a carer?

Vote

Topics

All posts(137)

All things PSP Association(137)

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.

Posts - PSP Association | HealthUnlocked

PSP Association

Hi newbie here so please be gentle. I was recently diagnosed with PSP

Still here... just.

Sudden Impulsiveness

PSP and the end

Still here ...

Peace

Grief is my middle name

My dad 1

My dad

severe reflux after PEG

This crazy disease

Priority setting partnership

Uncontrolled body temperature.

electrical sockets

Continued Health Care - provisioned care, or Personal Health Budget?

Our Story ….& why we’re fundraising for PSPA

new to PSP

new to PSP

new to PSP

Does anybody else suffer from keyboard mistakes?

Barbara 71

Missing Link

HOPE Is Everywhere And Anywhere

CBD: Bedroom and bathroom conversion/adaption advice

RotaBed - free to someone who would benefit

Psp and Lurasidone

Elsternwick

Supporting a loved one with psp

Motability Car

Thank you all

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive