Posts - PSP Association | HealthUnlocked

PSP Association

9,255 members • 11,352 posts

All posts for February 2024

Support groups

Hi everyone. My grandfather is about 2 years (from diagnosis) into his PSP but seems to be worse each time I see him. I’m struggling to cope with the change...

Hi everyone. My grandfather is about 2 years (from diagnosis) into his PSP but...

JusNeville

•2 months ago

9 Replies

Clinical Trial

I stumbled across this recent article about a new clinical trial - will be asking about it on our next clinic appointment...

I stumbled across this recent article about a new clinical trial - will be askin...

Bergenser

•2 months ago

8 Replies

Neck Supports

Hi I am working with a gent with PSP , 3 years in, I wondered if anyone has any recommendations for neck supports. I have looked online but know that...

Hi I am working with a gent with PSP , 3 years in, I wondered if anyone has any...

SimoOT

•2 months ago

8 Replies

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Enablers

Hi all This is my first time posting. My husband was initially thought to have Aphasia, but after further investigations, he was diagnosed with PSP 2 years...

Hi all This is my first time posting. My husband was initially thought to have...

Blueberry95

•2 months ago

10 Replies

Medication to comfort?

Today, my father learned he has PSP. We had known for some time and were trying to find a way to tell him. Eventually, he found out on his own and sent me an...

Today, my father learned he has PSP. We had known for some time and were tryin...

priest78

•2 months ago

13 Replies

Dropped head syndrome

I'm looking for advice on how to deal with dropped head syndrome. This has now become such an issue for my PSP client that eating out while in her wheelchair...

I'm looking for advice on how to deal with dropped head syndrome. This has now b...

Helper2

•2 months ago

7 Replies

Physio therapist

My mum has adnavce physio therapist the community 'physiotherapist' just handed me a leaflet and said to follow these , that she cant do. She said mum cannot...

My mum has adnavce physio therapist the community 'physiotherapist' just handed...

Xaiwal

•2 months ago

10 Replies

Memory Lane

How wonderful is it to see so many responses to Delmac's post from the dearest group members I've met along the journey? Blessings to all of you. Tim xx.

How wonderful is it to see so many responses to Delmac's post from the dearest g...

daddyt

•2 months ago

2 Replies

7 months since losing my beloved husband 💔

Its 7 months now since my darling Husband was taken from me because of this awful illness and it's still not getting any easier. I feel completely alone...

Its 7 months now since my darling Husband was taken from me because of this awfu...

Mad-about-animals

•2 months ago

4 Replies

Little tablets 🎶

Going through the medicine routine this morning I found myself making up a song - If you want to sing along it’s to the tune of “Little boxes” 🎶 Little...

Going through the medicine routine this morning I found myself making up a song ...

Bergenser

•2 months ago

16 Replies

Struggling with Walking

Hi. My Mum was diagnosed with vascular Corticobasal Syndrome a couple of years ago after becoming a little confused and a number of falls. She had a rapid...

Hi. My Mum was diagnosed with vascular Corticobasal Syndrome a couple of years ...

Milocorn1

•2 months ago

12 Replies

Yes No

In the big picture it is not a big thing, but there is one feature of PSP I'm struggling with all the time. From quite early on, the "yes/no" questions have...

In the big picture it is not a big thing, but there is one feature of PSP I'm st...

Bergenser

•2 months ago

17 Replies

PSPA March meet up at Leicester

The PSPA meet up at Leicester is on Saturday, 2 March 2024 at 2.00pm to 4.00pm. We travel from Nottingham so can offer a lift if you need it. Helen Chapman...

The PSPA meet up at Leicester is on Saturday, 2 March 2024 at 2.00pm to 4.00pm....

Zerachiel

•2 months ago

2 Replies

Feeling lost

For last 4 days I've been trying to look after mum even took two days of work. But I noticed lately she has been choking / randomly burping and sometime pulls...

For last 4 days I've been trying to look after mum even took two days of work. B...

Xaiwal

•2 months ago

9 Replies

free from psp

My husband is free from this horrible disease. He passed away 1/24/24 at 68. I miss him horribly but I’m so glad he’s not suffering anymore. He was diagnosed...

My husband is free from this horrible disease. He passed away 1/24/24 at 68. I ...

Kathylou62

•2 months ago

12 Replies

wheelchairs for sale

I’ve just posted details of two wheelchairs on Gumtree. One is a wheeled armchair which is not easy to find and particularly useful in a nursing home as most...

I’ve just posted details of two wheelchairs on Gumtree. One is a wheeled armchai...

messier

•2 months ago

10 Replies

Thank you.

A big thank you to you all for your very kind messages. Keeping busy with a friend for company at the moment. The local hospice has been in touch so might take...

A big thank you to you all for your very kind messages. Keeping busy with a frie...

Wigwambob

•2 months ago

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New to PSP

I care for my mum, who was recently diagnosed with PsP I work full time from home and have private carers who help out. From 2016-17 I noticed my mum speech...

I care for my mum, who was recently diagnosed with PsP I work full time from hom...

Xaiwal

•2 months ago

4 Replies

farewell Sam

My husband is now free. He was diagnosed in 2016 and was spared of covid but PSP finally took him last January 25. He passed peacefully in an unusual...

My husband is now free. He was diagnosed in 2016 and was spared of covid but P...

Mamalou59

•2 months ago

38 Replies

Goodbye

This forum has been a great support for me,I didn't post very often as I seemed to get the answers before I asked the questions. Sadly my husband died on...

This forum has been a great support for me,I didn't post very often as I seemed ...

Wigwambob

•2 months ago

24 Replies

Voice amplification

Good morning All. My husband’s voice has become so quiet that I’m struggling to understand him now. He is speaking and can hold a conversation but it’s so...

Good morning All. My husband’s voice has become so quiet that I’m struggling to ...

Joanne19

•3 months ago

9 Replies

London Marathon update - please help!

...

Ratcliffe

•3 months ago

4 Replies

clenched fist

do others with PSP have problems with painful clenched fist an.dm if. So what do you do about it

do others with PSP have problems with painful clenched fist an.dm if. So what do...

Tabytak

•3 months ago

12 Replies

Virtual wards

Hello, this is my first post but reading previous posts have been so comforting to know that as a family we are not alone. My Mum was diagnosed with PSP in...

Hello, this is my first post but reading previous posts have been so comforting ...

Grease3

•3 months ago

2 Replies

"Linda Ronstadt - the sound of my voice"

There's an earlier post on the CNN documentary about Linda Ronstadt - I've just found it's on BBC iPlayer at the moment and watched it with my husband. A few...

There's an earlier post on the CNN documentary about Linda Ronstadt - I've just ...

Bergenser

•3 months ago

3 Replies

continuous sounds

All, While I have been following all the posts here, this is my first post. My mom has been diagnosed with PSP in 2020. She has been declining slowly since...

All, While I have been following all the posts here, this is my first post. My ...

kumar122

•3 months ago

5 Replies

Voice bank for PSP

Hi, my mum was diagnosed with PSP last summer but was having symptoms for around 2 years previously. When we got the diagnosis everything made sense. I had...

Hi, my mum was diagnosed with PSP last summer but was having symptoms for around...

NeeJo

•3 months ago

15 Replies

Nursechel

Hi I have posted before . My mum has dementia and PSP . She is practically bed bound and in a care home . It’s about 5 years since her diagnosis . She is...

Hi I have posted before . My mum has dementia and PSP . She is practically bed...

Nursechel

•3 months ago

9 Replies

Sharing Locations An Update

Hi All Friends - I just wanted to say a big thank you to all of you for responding to my post. I do hope through the responses you are able to make contact...

Hi All Friends - I just wanted to say a big thank you to all of you for respondi...

Millidog

•3 months ago

54 Replies

Acting out Dreams

My husband was diagnosed with PSP almost one year ago. He has been acting out his dreams for a couple of years. Several times he has choked me with his arm as...

My husband was diagnosed with PSP almost one year ago. He has been acting out hi...

Granny29335

•3 months ago

13 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for February 2024

Support groups

Clinical Trial

Neck Supports

Enablers

Medication to comfort?

Dropped head syndrome

Physio therapist

Memory Lane

7 months since losing my beloved husband 💔

Little tablets 🎶

Struggling with Walking

Yes No

PSPA March meet up at Leicester

Feeling lost

free from psp

wheelchairs for sale

Thank you.

New to PSP

farewell Sam

Goodbye

Voice amplification

London Marathon update - please help!

clenched fist

Virtual wards

"Linda Ronstadt - the sound of my voice"

continuous sounds

Voice bank for PSP

Nursechel

Sharing Locations An Update

Acting out Dreams

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive