Posts - PSP Association | HealthUnlocked

PSP Association

9,250 members • 11,347 posts

All posts for September 2022

Advice needed on communication devices

Would anyone have any recommendations of communication devices? Dad’s speech is getting more limited and with his CBD so is his cognitive ability. He is still...

Would anyone have any recommendations of communication devices? Dad’s speech is ...

Catski78

•2 years ago

18 Replies

Recommendations for a robust outdoor walker with pneumatic tyres?

We are looking for a really good mobility walker that is not too expensive. The walker we bought is way too basic with plastic wheels but when he hits a small...

We are looking for a really good mobility walker that is not too expensive. The ...

Koalagal

•2 years ago

5 Replies

Recent diagnosis for PSP

My mum has recently been diagnosed with PSP and we are awaiting a meeting with the neurosurgeon and occupational health. Whilst I have done quite a lot of...

My mum has recently been diagnosed with PSP and we are awaiting a meeting with t...

Donnelly123

•2 years ago

10 Replies

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My JOY

We keep pushing through day after day. Swallowing is the chief problem every single day, and we are making all the necessary changes as best we can. What a...

We keep pushing through day after day. Swallowing is the chief problem every sin...

bazooka111

•2 years ago

17 Replies

Rates of PSP in Maghull, Liverpool

hi, My father had PSP , at the time of his diagnosis two other people who lived in neighbouring roads - also got diagnosed with PSP (similar age ) I’ve...

hi, My father had PSP , at the time of his diagnosis two other people who live...

Dolly9to5

•2 years ago

20 Replies

Medication for PSP

I would like to discuss with anyone else who has my symptoms and is taking my medication. Carbidopa and Levodopa and Amantadine

I would like to discuss with anyone else who has my symptoms and is taking my me...

Zarzuela

•2 years ago

10 Replies

Slow swallow ... worse every day

My heart is breaking tonight -- Mom has lost so much weight, and her swallow has diminished so very much. I can hardly get anything down. This time last...

My heart is breaking tonight -- Mom has lost so much weight, and her swallow has...

bazooka111

•2 years ago

45 Replies

Clonazepam for freezing gait?

My husband's CBD has progressed to the point where he can hardly walk at all, even holding on to me. Getting him down the hall to the toilet and back to his...

My husband's CBD has progressed to the point where he can hardly walk at all, ev...

Perrywrinkle

•2 years ago

8 Replies

assistive augmented communication - advice please

Hello I’m new here I’d really appreciate your experiences on how you are communicating as a caregiver with a patient who cannot speak. We were introduced...

Hello I’m new here I’d really appreciate your experiences on how you are commu...

Dankhl

•2 years ago

7 Replies

Having a bad day i hate this awful disease.

Hi friends just sitting here on my own having a cry. For the first time mum has done diarhoea all over the bed in her sleep. Mum is currently on the loo and im...

Hi friends just sitting here on my own having a cry. For the first time mum has ...

Cinderella80

•2 years ago

27 Replies

Shocked and confused

Hello to all of you wonderful people! I'm happy and confused all at once. My loved one has suffered from PSP since 2015 maybe a little longer. The last 2 years...

Hello to all of you wonderful people! I'm happy and confused all at once. My lov...

Stephanielayell82

•2 years ago

12 Replies

Agitation and delirium with CBD

My dad is 76 and has corticobasel degeneration. For the past 9 weeks he has not slept for more than an hour, day or night. He has been agitated and delirious...

My dad is 76 and has corticobasel degeneration. For the past 9 weeks he has not ...

Catski78

•2 years ago

9 Replies

Questions to ask the consultant

Hi. We’re in NE England. My mum was diagnosed with PSP last year. She’s 86 and although her mobility is very limited and her fine motor skills are...

Hi. We’re in NE England. My mum was diagnosed with PSP last year. She’s 86 and a...

Otter66

•2 years ago

3 Replies

Fall Alarm/Alert Service

Hi All, Please can you share with me recommendations for good quality and effective fall alarm / alert watch / pendant company. I have found 2 - Careline 365...

Hi All, Please can you share with me recommendations for good quality and effect...

Millidog

•2 years ago

2 Replies

Are sleeping tablets suitable for someone with psp?

Hi friends i care for my mother alone. She has psp and feels like she is getting abit worse. I sleep in her bed as it is easier for me to get up when she...

Hi friends i care for my mother alone. She has psp and feels like she is getting...

Cinderella80

•2 years ago

12 Replies

Photos of suitable chair with head support for bathroom.

Hi friends i just wanted to ask if any of you have a good chair with head support for the bathroom. My mums head is really tilting now towards the ceiling when...

Hi friends i just wanted to ask if any of you have a good chair with head suppor...

Cinderella80

•2 years ago

2 Replies

Newly diagnosed father in law

Hi everyone, my father in law has just been diagnosed with PSP, although we believe this has been going on for years now and struggled to get a diagnosis. With...

Hi everyone, my father in law has just been diagnosed with PSP, although we beli...

Ellenmck

•2 years ago

12 Replies

Psp and cataracts.

Hi friends just wanted to ask if anyone has any experience with a loved one who has psp and has has cataracts. At long last my mum got an appointment with a...

Hi friends just wanted to ask if anyone has any experience with a loved one who ...

Cinderella80

•2 years ago

11 Replies

NHS Contuing Health Care

Hi, I'm wondering if anyone has any experience of the above in England please? My dad has PSP, diagnosed just over a year ago but we think it's been around...

Hi, I'm wondering if anyone has any experience of the above in England please? ...

Lindle100

•2 years ago

12 Replies

Grunting noise while sleep

Hi everyone, My husband has this inhuman PSP, now makes grunting loud sound while sleep all night. It’s very difficult for me to relax and sleep in other...

Hi everyone, My husband has this inhuman PSP, now makes grunting loud sound whi...

Jibjh

•2 years ago

3 Replies

hi joined today as my FIL has PSP and am looking for advice as his condition is going down hill.

any advice will be gratefully appreciated we think he is going into the last stage not (end of life) thank you for reading

any advice will be gratefully appreciated we think he is going into the last st...

Happysole

•2 years ago

1 Reply

more lucid when having a urine infection?

good morning all warriors my mum who has psp I believe is starting to get a urine infection and I have noticed a massive improvement in cognition and...

good morning all warriors my mum who has psp I believe is starting to get a...

Tillytott54

•2 years ago

7 Replies

Upcoming PSPA Support Group Meetings

A number of Support Group Meetings are taking place over the next week. If you would like to connect and chat with people living with PSP & CBD, you can join...

A number of Support Group Meetings are taking place over the next week. If you ...

HelenPSPA

Administrator•2 years ago

1 Reply

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for September 2022

Advice needed on communication devices

Recommendations for a robust outdoor walker with pneumatic tyres?

Recent diagnosis for PSP

My JOY

Rates of PSP in Maghull, Liverpool

Medication for PSP

Slow swallow ... worse every day

Clonazepam for freezing gait?

assistive augmented communication - advice please

Having a bad day i hate this awful disease.

Shocked and confused

Agitation and delirium with CBD

Questions to ask the consultant

Fall Alarm/Alert Service

Are sleeping tablets suitable for someone with psp?

Photos of suitable chair with head support for bathroom.

Newly diagnosed father in law

Psp and cataracts.

NHS Contuing Health Care

Grunting noise while sleep

﻿hi joined today as my FIL has PSP and am looking for advice as his condition is going down hill.

﻿more lucid when having a urine infection?

Upcoming PSPA Support Group Meetings

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive

hi joined today as my FIL has PSP and am looking for advice as his condition is going down hill.

more lucid when having a urine infection?