Posts - PSP Association | HealthUnlocked

PSP Association

9,252 members • 11,349 posts

All posts for July 2022

random limb movement

Hi all psp warriors and superhero carers,I have a quick question.my mum has psp diagnosed December 2019 she still can walk ...more like a shuffle ,and the...

Hi all psp warriors and superhero carers,I have a quick question.my mum has ps...

Tillytott54

•2 years ago

5 Replies

Repetitive behaviour

Hi My mother has PSP (stage 3) and is cared for by my father with help of carers twice a day. My mother has become obsessed with a daily routine of...

Hi My mother has PSP (stage 3) and is cared for by my father with help of carer...

MartinHLondon

•2 years ago

6 Replies

PSP Pain

My husband was diagnosed with PSP in Jan. 2019. He had an MRI after complaining about headaches. The pain has not lessened, and now includes his jaw. He...

My husband was diagnosed with PSP in Jan. 2019. He had an MRI after complaining...

ladydog255

•2 years ago

1 Reply

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How does a hospice help with someone with PSP?

Hi friends I just wanted to ask if anyone has joined a hospice and is caring for someone with PSP I would like to know how they help? What types of services...

Hi friends I just wanted to ask if anyone has joined a hospice and is caring fo...

Cinderella80

•2 years ago

13 Replies

raising money for PSPA

Hi, hope this is okay to to share. We lost our nan with PSP 3 years ago. Since my nans diagnosis I have done numerous things to help raise awareness and...

Hi, hope this is okay to to share. We lost our nan with PSP 3 years ago. Since...

Mandyfox6

•2 years ago

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Anyone with the rare dementia service in UK and with the district nurses what's your experience?

Hi friends my mum has PSP and I would like to ask if anyone has been referred to the rare dementia service in the UK and where about in the UK? Also is anyone...

Hi friends my mum has PSP and I would like to ask if anyone has been referred t...

Cinderella80

•2 years ago

5 Replies

Open Mouth with PSP

hi friends I am new here, my husband is suffering from this horrible illness, he was diagnosed in nov 2018. Since then things are not the same, illness has...

hi friends I am new here, my husband is suffering from this horrible illness,...

Jibjh

•2 years ago

12 Replies

Right side weak with PSP?

Hi friends just wanted to ask if any of you know that if you have PSP your right side becomes weaker? My mum has PSP and I have noticed that her right foot...

Hi friends just wanted to ask if any of you know that if you have PSP your righ...

Cinderella80

•2 years ago

9 Replies

Overwhelmed in Kentucky….

Hi to all! My husbands health is going downhill rapidly. I don’t know how to cope with this all. I feel overwhelmed. The falls, the choking,….. and now his...

Hi to all! My husbands health is going downhill rapidly. I don’t know how to cop...

Hidden

•2 years ago

42 Replies

Trying to stay positive

Hope you are all well and enjoying the heat. 😎 I wrote a few weeks ago about my CBD affecting my right hand now ( my left side is the bad one ) It’s...

Hope you are all well and enjoying the heat. 😎 I wrote a few weeks ago about m...

Mariawatters

•2 years ago

5 Replies

PSPA Matters summer edition now available

The summer edition of PSPA Matters is now available to download and read from our website! In this edition of the magazine you will find research updates,...

The summer edition of PSPA Matters is now available to download and read from ou...

HelenPSPA

Administrator•2 years ago

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Any PSP groups in Leicester UK?

Good morning all. My dad is in his 3rd year of living with PSP. Obviously we have seen a massive decline in his physical and mental state. I would...

Good morning all. My dad is in his 3rd year of living with PSP. Obviously ...

Banta123

•2 years ago

5 Replies

PEG tube question

My mother has had a PEG tube since November 2021. Before having the PEG tube, she was hospitalised for a UTI. She is completely immobile, can't speak, can't...

My mother has had a PEG tube since November 2021. Before having the PEG tube, s...

Cricket378

•2 years ago

10 Replies

days out for disabled in Birmingham?

Hi friends just wanted to ask if anyone knows of any organisations in the Birmingham area that provide services for people with disabilities to take out on...

Hi friends just wanted to ask if anyone knows of any organisations in the Birmi...

Cinderella80

•2 years ago

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Hoist

Has anyone experience of Autochair Milford person hoist.

TimGill12

•2 years ago

1 Reply

local groups

are there any local groups or people who have p.sp in the Essex area. Would be so nice to talk with other people who are going though the same problem

are there any local groups or people who have p.sp in the Essex area. Would be s...

Poppypolo

•2 years ago

2 Replies

thickener

Hi has anybody used baby rice as a thickener, my husband can not get on with the thickener from the doctors, we are dealing with constipation all the time...

Hi has anybody used baby rice as a thickener, my husband can not get on with the...

Poppypolo

•2 years ago

7 Replies

looking for a support group I the North Cotswold area of the Uk

Hi, I’m looking for a support group in the North Cotswold area in the Uk. Any help would be buch appreciated. Sun city west.

Hi, I’m looking for a support group in the North Cotswold area in the Uk. Any h...

Suncitywest

•2 years ago

6 Replies

Moving on

Hello, dear friends! It has been 14 months since Ian's moving on to glory.....and now it's time for me to move on from Spain, where we lived for 18 very...

Hello, dear friends! It has been 14 months since Ian's moving on to glory.......

JCRy

•2 years ago

8 Replies

Kidney stones from drinking too little water… and other well-meant mistakes.

I have surgery next week to remove a big kidney stone. We had to delay because I had a serious UTI that needed to be taken care of first. They placed a stent...

I have surgery next week to remove a big kidney stone. We had to delay because I...

Kayelless

•2 years ago

2 Replies

Wailing

My 78 year old mom has started to wail, several times a day - she has lost her speech, so i imagine the wailing is an expression of frustration as well as the...

My 78 year old mom has started to wail, several times a day - she has lost her s...

LARWLSN

•2 years ago

9 Replies

Stockport & Cheshire Support Group update

On Friday we held our first face to face meeting since Covid started and met in our new venue in Bramhill. It was lovely to see familiar faces and...

On Friday we held our first face to face meeting since Covid started and met in ...

AJK2001

•2 years ago

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Shouting out

My husband has CBD he is constantly shouting out. He talks non stop which is impossible to understand. It's so difficult to deal with. Has any one else...

My husband has CBD he is constantly shouting out. He talks non stop which is im...

Northstar1

•2 years ago

1 Reply

Advice on head support on perch stool

Hi friends my mum has PSP and I am her only carer. I would love some ideas if anyone knows of any perch stools available with a neck and head support. I try...

Hi friends my mum has PSP and I am her only carer. I would love some ideas if a...

Cinderella80

•2 years ago

6 Replies

complete loss of language

My husband,Bob, has PSP & despite the input of our wonderful Speech & Language Therapist lost all intelligible speech a year ago. Although he can still...

My husband,Bob, has PSP & despite the input of our wonderful Speech & Langua...

Plantnut

•2 years ago

10 Replies

PSP and Macuna

Hi does Macuna help in PSP related symptoms though lot of articles state that L-DOPA is ineffective for PSP but works for Parkinson's

Hi does Macuna help in PSP related symptoms though lot of articles state that L-...

Seeker_12

•2 years ago

11 Replies

CHOKINGING

IS IT POSSIBLE TO CHOKE ON YOU OWN SPUTUM

alfie08

•2 years ago

6 Replies

Need online help for a stressed out carer

Hi friends my mum has PSP and I am her only carer although she has two other daughters and two sons which the youngest and his wife are living in the same...

Hi friends my mum has PSP and I am her only carer although she has two other dau...

Cinderella80

•2 years ago

9 Replies

Diapers

Does anyone have recommendations for diapers? We're using Tena XL, she makes it through the night but occasionally leaks when sitting down. She gets changed...

Does anyone have recommendations for diapers? We're using Tena XL, she makes it ...

Jodi999

•2 years ago

7 Replies

Where are we in this process?

My 72 y/o husband was diagnosed (after a few years of misdiagnoses, beginning in 2018 with symptoms beginning in 2017 or so) with PSP in 2020/2021. He has it...

My 72 y/o husband was diagnosed (after a few years of misdiagnoses, beginning in...

DB201

•2 years ago

21 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for July 2022

﻿random limb movement

Repetitive behaviour

PSP Pain

﻿How does a hospice help with someone with PSP?

﻿raising money for PSPA

﻿Anyone with the rare dementia service in UK and with the district nurses what's your experience?

Open Mouth with PSP

﻿Right side weak with PSP?

Overwhelmed in Kentucky….

Trying to stay positive

PSPA Matters summer edition now available

﻿Any PSP groups in Leicester UK?

﻿PEG tube question

﻿days out for disabled in Birmingham?

Hoist

local groups

thickener

looking for a support group I the North Cotswold area of the Uk

﻿Moving on

Kidney stones from drinking too little water… and other well-meant mistakes.

Wailing

Stockport & Cheshire Support Group update

﻿Shouting out

﻿Advice on head support on perch stool

﻿complete loss of language

PSP and Macuna

CHOKINGING

Need online help for a stressed out carer

Diapers

Where are we in this process?

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive

random limb movement

How does a hospice help with someone with PSP?

raising money for PSPA

Anyone with the rare dementia service in UK and with the district nurses what's your experience?

Right side weak with PSP?

Any PSP groups in Leicester UK?

PEG tube question

days out for disabled in Birmingham?

Moving on

Shouting out

Advice on head support on perch stool

complete loss of language