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PSP Association

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Dad’s 8 year PSP journey at its end

My father was diagnosed with PSP in 2016 .. which was post a few backward falls .. I had noticed a few changes besides balance issues like not blinking for...

My father was diagnosed with PSP in 2016 .. which was post a few backward falls ...

Dravid100

•2 days ago

17 Replies

Awareness of PSP

Having lost my wife earlier this year with this terrible disease, and watching this collection of tragic stories and cries for help over the months before and...

Having lost my wife earlier this year with this terrible disease, and watching t...

autex2000

•2 days ago

19 Replies

Liquid Stool

Good morning, fellow travelers on this horrid journey! My husband was diagnosed with CBD about 5 years ago. He is now bed bound, can barely speak and requires...

Good morning, fellow travelers on this horrid journey! My husband was diagnosed...

Indiana-Girl

•3 days ago

7 Replies

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Struggling

My husband had been experiencing various problems for some years including limbs on his left side feeling strange, gradual problems with speech, falls,...

My husband had been experiencing various problems for some years including limbs...

Big_band_music

•4 days ago

15 Replies

I am Maria

hi there ! Ian Maria Hipolito’s and was a nurse by professio I am a Filipino but presently residing at 113 Fordham Road,Ford estate,Sunderland, was recently...

hi there ! Ian Maria Hipolito’s and was a nurse by professio I am a Filipino but...

Adobongbaboy

•6 days ago

5 Replies

Goodbye

Just an update on mum. She finally passed peacefully on 27th Aug 2024. A courageous battle until the end. We are in awe of her. I'm heartbroken by her journey....

Just an update on mum. She finally passed peacefully on 27th Aug 2024. A courage...

MRSYafffle

•7 days ago

16 Replies

Advice re respite care - Chorley/Wigan area

My husband (59) has mid-stage PSP ( diagnosed May 21, fully wheelchair bound and fairly severe speech/eating issues) We've been awarded some funding for...

My husband (59) has mid-stage PSP ( diagnosed May 21, fully wheelchair bound an...

Vraic

•7 days ago

12 Replies

Care options? - Refused CHC - dad cares for mum 24/7.

Hi there, this is my first post here... My mother was diagnosed with PSP in 2021, and in 2022 she fell and broke her hip. After a series of botched operations...

Hi there, this is my first post here... My mother was diagnosed with PSP in 202...

Neffian

•8 days ago

11 Replies

final phase

hello, my husband is now in the hospital, on oxygen and what seems endless antibiotic’s. They have told us that he is nearing the end, he keeps having spasms...

hello, my husband is now in the hospital, on oxygen and what seems endless antib...

Purp23

•8 days ago

7 Replies

CBD and Seizures

Hi, I witnessed my mum having a seizure yesterday eve which is the most scary experience I have had. Mum was in bed, I had just administered her meds and went...

Hi, I witnessed my mum having a seizure yesterday eve which is the most scary e...

bichonbear1

•9 days ago

18 Replies

Mom Recently Diagnosed 😢 Wondering about Speech Cloning/Voice Banking

Hello everyone. My mom was diagnosed with PSP on May 31st of this year but has been experiencing symptoms for about two and a half years now. She is only 56...

Hello everyone. My mom was diagnosed with PSP on May 31st of this year but has b...

ThankfulFish

•11 days ago

7 Replies

Group - West Yorkshire ?

is there a group in/near Halifax, West Yorkshire? Anyone interested in starting one?

is there a group in/near Halifax, West Yorkshire? Anyone interested in starting ...

Diggerandsam

•11 days ago

10 Replies

Asking for your stories and help

Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother was finally diagnosed. We are from Poland, where there is no other treatment...

Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother w...

garucha

•11 days ago

11 Replies

Just a rant

Dear All, I apologise now for the rant, but I'm so frustrated. I finally managed to get Mum's nursing home to complete a Continuing Healthcare Checklist in...

Dear All, I apologise now for the rant, but I'm so frustrated. I finally manag...

GeorgeMMXVI

•12 days ago

6 Replies

How do I save posts in Health Unlocked?

How do I save posts in Health Unlocked? I've searched 'Help' but there is nothing there. It's obvious how to retrieve saved post, but not obvious how to save...

How do I save posts in Health Unlocked? I've searched 'Help' but there is nothin...

MullerRice

•14 days ago

6 Replies

PSP and care homes

Hi everyone, I have been a member of this site for a year now and read the posts regulary, taking great advice and comfort from you all. My 67 year old mum has...

Hi everyone, I have been a member of this site for a year now and read the posts...

Emma-C

•15 days ago

7 Replies

My husband lost his fight

Our journey with PSP has been brief .. compared to many on here. From symptoms showing up to passing I would estimate 4 years. Diagnosed in May 2023 after a...

Our journey with PSP has been brief .. compared to many on here. From symptoms...

Sun-flowerwearer

•16 days ago

40 Replies

Increased Tremors

The tremors in my husbands right arm are becoming more frequent and whilst I try to stop the shaking by placing my hand on his arm they start again which is...

The tremors in my husbands right arm are becoming more frequent and whilst I try...

Licquoricelover

•16 days ago

5 Replies

Have you got Respect Form/Palliative Care in place?

Hi all, I haven't posted for a while, although I have been reading the posts regularly and send my deepest condolescences to all loved ones who have passed...

Hi all, I haven't posted for a while, although I have been reading the posts reg...

Loveispatient23

•17 days ago

3 Replies

Intermittent Swallowing stopping

Hi My wife is now 9 years into her journey with PSP. Now can no longer speak and is on level 2 liquid diet only. Totally immobile and incontinent. Two days...

Hi My wife is now 9 years into her journey with PSP. Now can no longer speak an...

Scottoppy

•18 days ago

2 Replies

Full Body Tremors & Excessive sweating

Has anyone’s loved ones experienced Full Body Tremors & Excessive sweating with PSP. ? My husband has these on a fairly regular basis now. Lasting 2-6 days....

Has anyone’s loved ones experienced Full Body Tremors & Excessive sweating with ...

Pinkcamelia

•19 days ago

8 Replies

Vivid dreams/hallucinations

Hi everyone. Mum has recently started having really distressing vivid dreams . This morning she pressed her lifeline button as she was convinced I was dead and...

Hi everyone. Mum has recently started having really distressing vivid dreams . T...

Joluu

•23 days ago

5 Replies

Leaning

My husband leans a lot to the left which makes his arm ache when leaning it on the arm of his recliner. Has anyone any suggestions how to keep him in an...

My husband leans a lot to the left which makes his arm ache when leaning it on t...

G0lfinggirl

•23 days ago

17 Replies

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

•25 days ago

14 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

•27 days ago

11 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

•29 days ago

8 Replies

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

•1 month ago

25 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

•1 month ago

7 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

•1 month 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

•1 month ago

2 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

Dad’s 8 year PSP journey at its end

Awareness of PSP

Liquid Stool

Struggling

I am Maria

Goodbye

Advice re respite care - Chorley/Wigan area

Care options? - Refused CHC - dad cares for mum 24/7.

final phase

CBD and Seizures

Mom Recently Diagnosed 😢 Wondering about Speech Cloning/Voice Banking

Group - West Yorkshire ?

Asking for your stories and help

Just a rant

How do I save posts in Health Unlocked?

PSP and care homes

My husband lost his fight

Increased Tremors

Have you got Respect Form/Palliative Care in place?

Intermittent Swallowing stopping

Full Body Tremors & Excessive sweating

Vivid dreams/hallucinations

Leaning

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

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive