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PSP Association

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All posts for January 2024

Selegiline side effects

Hi All. Due to drug shortages we've been unable to get rasagiline and had to swap to selegiline. Since the swap mum has had lots of unusual bleeding and the GP...

Hi All. Due to drug shortages we've been unable to get rasagiline and had to swa...

Joluu

•11 months ago

1 Reply

Is it normal for my husband to gain weight and his speech improve? My husband has been battling PSP since 2019 he is bed bound

he was diagnosed Early in 2022 his symptoms have progressed slowly until August of 2023 At that time a medication changed caused him to pee away his...

he was diagnosed Early in 2022 his symptoms have progressed slowly until August...

Robertdonna

•11 months ago

4 Replies

Advice on eyes and neck please

Hello all My mother was eventually diagnosed with PSP in December 2021 after various delays due to Covid as well as the usual misdiagnoses that occur with...

Hello all My mother was eventually diagnosed with PSP in December 2021 after v...

GB07

•11 months ago

6 Replies

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CHC success…thank you PSPA

My husband, Philip, has had PSP for at least 7 years but has declined considerably in the last year as this horrendous disease has gripped most of his body....

My husband, Philip, has had PSP for at least 7 years but has declined considerab...

Joanne19

•11 months ago

2 Replies

Diagnosis received yesterday.

My lovely mum finally got a diagnosis yesterday after approximately 5 years of us noticing symptoms. Her consultant was amazing and I could have cried when he...

My lovely mum finally got a diagnosis yesterday after approximately 5 years of u...

Italiansunsets

•11 months ago

8 Replies

wheelchair accessible vehicle hire

UK advice please. Has anyone hired a wheelchair accessible vehicle for a few days as my husband can no longer get in and out of our car and is no longer able...

UK advice please. Has anyone hired a wheelchair accessible vehicle for a few d...

Sun-flowerwearer

•11 months ago

4 Replies

CHC funding and the PSPA

The support offered by the PSPA in applying for, or appealing a decision on NHS CHC Funding This link is to a .pdf document by the PSPA regarding CHC funding...

The support offered by the PSPA in applying for, or appealing a decision on NHS ...

Zerachiel

•11 months ago

1 Reply

A wonderful moment....

I haven't heard my wife's "proper" voice since 2019, we initially went to the doctors at the start of this PSP journey with a soft voice. Although she does...

I haven't heard my wife's "proper" voice since 2019, we initially went to the do...

Zerachiel

•11 months ago

5 Replies

What is best curable treatment of Progressive supra nuclear palsy

Patient has1. Eating and drinking problem 2. Vision problem 3. Dehydration since not able to drink liquid 4. Memory loss , weight loss 5. Stiffness in body...

Patient has1. Eating and drinking problem 2. Vision problem 3. Dehydration sin...

1Brijesh

•11 months ago

6 Replies

Hanging on

Remarkably mum is still hanging on through sheer grit we think.She's very weak and frail, had another couple of falls. Been in hospital with pneumonia before...

Remarkably mum is still hanging on through sheer grit we think.She's very weak a...

MRSYafffle

•11 months ago

4 Replies

Infection

I posted here a couple of weeks ago wondering how much worse it can get. Thank you for all the replies on that. My mother in law is currently in hospital, she...

I posted here a couple of weeks ago wondering how much worse it can get. Thank y...

Jodi999

•11 months ago

6 Replies

PEG feeding

Good morning. This thread is very relevant to our family just now. Mum has PSP and chokes for prolonged periods fairly regularly when being fed pureed diet...

Good morning. This thread is very relevant to our family just now. Mum has PSP a...

buzzbay

•11 months ago

9 Replies

First Responders / Hospital Visits

Earlier last year I created this document so that if the emergency services turned up they would understand my wife and her requirements; It is in a on the...

Earlier last year I created this document so that if the emergency services tur...

Zerachiel

•11 months ago

6 Replies

Peg Feeding

I spoke to the dietitian yesterday and she mentioned having a peg fitted for my husband. We knew that this would probably happen eventually but don’t know a...

I spoke to the dietitian yesterday and she mentioned having a peg fitted for my ...

Redjune1

•11 months ago

12 Replies

Today was hard

Today was a hard day. My dad didn't open his eyes at all during our visit. He whispered hello when we first arrived but that was all. I feel completely...

Today was a hard day. My dad didn't open his eyes at all during our visit. He wh...

DALLY123

•11 months ago

7 Replies

Unresponsive episodes

Hello everyone. This is my first post. My Husband was diagnosed with PSP in October 2022, following two misdiagnoses. One morning, 4 months ago, I found him...

Hello everyone. This is my first post. My Husband was diagnosed with PSP in Oc...

Bertieandpiper

•11 months ago

21 Replies

Intravenous nutrient therapies (IVNT), or vitamin IV therapies

Hi Background - later stage of PSP. Difficult and slow getting food and liquids in due to swallow ability. I’m wondering if anyone has tried IV therapies...

Hi Background - later stage of PSP. Difficult and slow getting food and liquids...

Sweenstar

•11 months ago

4 Replies

Finally free

My beloved Dale was diagnosed with PSP in 2020 and his health rapidly declined. frequent fall at first, then by 2022 was unable to walk . Last summer he could...

My beloved Dale was diagnosed with PSP in 2020 and his health rapidly declined....

audreydrs

•11 months ago

11 Replies

Deterioration

Dear all I write this post with frustration. My poor Mum with PSP, diagnosed March 2021 has rapidly declined since Christmas. Mum has been in a nursing home...

Dear all I write this post with frustration. My poor Mum with PSP, diagnosed M...

GeorgeMMXVI

•11 months ago

19 Replies

my husband has been having problems with his eyes not staying closed, this happnight for 4 1/2 hrs and again today for an hou

my husband has been having problems with his eyes since Sunday night when for 4 hrs he couldn’t close them, his eyes just wouldn’t close. He also had some kind...

my husband has been having problems with his eyes since Sunday night when for 4 ...

Dar12

•11 months ago

6 Replies

PSP wins ... again

Hello everyone. Thought it would be ages before I would be writing this but no.Last Friday morning an angel came and took my darling husband John by the hand...

Hello everyone. Thought it would be ages before I would be writing this but no.L...

Leosta

•1 year ago

72 Replies

Fundraising Positivity

Hi all, I posted on here last month, having lost my dad to PSP in November 2022, we found out my Uncle also had been diagnosed with PSP. Myself and my...

Hi all, I posted on here last month, having lost my dad to PSP in November 202...

Sammount

•1 year ago

6 Replies

New to this

My husband has just been diagnosed. Not sure what we are doing or where to go from here.

My husband has just been diagnosed. Not sure what we are doing or where to go f...

PapHelper42

•1 year ago

5 Replies

uk based Liverpool support

hi My dad has bee diagnosed with CBD not sure if it’s better, the same or worse than the initial Parkinson’s diagnosis but I’m looking for any help. so...

hi My dad has bee diagnosed with CBD not sure if it’s better, the same or wors...

Awebb27

•1 year ago

11 Replies

Neurologist in Singapore

Hi, everyone! I hope you keep fighting against PSP. I will be staying in Singapore for an extended period starting next Monday and I should like to take the...

Hi, everyone! I hope you keep fighting against PSP. I will be staying in Singa...

BluesHealer

•1 year ago

6 Replies

Psychosis and PSP

Hi everyone, This is my first post here. My dad was diagnosed with PSP a few months ago after years of suffering with various symptoms and being misdiagnosed....

Hi everyone, This is my first post here. My dad was diagnosed with PSP a few mo...

DALLY123

•1 year ago

7 Replies

phone advice please

my mum has PSP and as a result of her failing eyesight and decreasing manual dexterity her Samsung mobile is becoming too difficult to use for texts and...

my mum has PSP and as a result of her failing eyesight and decreasing manual dex...

Girvangal

•1 year ago

12 Replies

Hospital Stay

On Sunday my husband, who is in a care home, was taken to hospital with suspected Cellulitis. It looked like he might be admitted. Although he has had many...

On Sunday my husband, who is in a care home, was taken to hospital with suspecte...

Redjune1

•1 year ago

6 Replies

Life after

Dear All I wrote a post a few weeks ago regarding my dad who I lost in November 2023 to PSP. For the past 2 months I have been non stop researching and...

Dear All I wrote a post a few weeks ago regarding my dad who I lost in Novembe...

Khalissi

•1 year ago

18 Replies

End Game.

Unfortunately Sandra, my wife, has succombed to this dreadful disease. A merciful release

Unfortunately Sandra, my wife, has succombed to this dreadful disease. A mercif...

autex2000

•1 year ago

6 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for January 2024

Selegiline side effects

Is it normal for my husband to gain weight and his speech improve? My husband has been battling PSP since 2019 he is bed bound

Advice on eyes and neck please

CHC success…thank you PSPA

Diagnosis received yesterday.

wheelchair accessible vehicle hire

CHC funding and the PSPA

A wonderful moment....

What is best curable treatment of Progressive supra nuclear palsy

Hanging on

Infection

PEG feeding

First Responders / Hospital Visits

Peg Feeding

Today was hard

Unresponsive episodes

Intravenous nutrient therapies (IVNT), or vitamin IV therapies

Finally free

Deterioration

my husband has been having problems with his eyes not staying closed, this happnight for 4 1/2 hrs and again today for an hou

PSP wins ... again

Fundraising Positivity

New to this

uk based Liverpool support

Neurologist in Singapore

Psychosis and PSP

phone advice please

Hospital Stay

Life after

End Game.

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive