Posts - PSP Association | HealthUnlocked

PSP Association

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All posts for October 2022

My husband’s trials are over

Dear all I recently posted on this site asking for advice on whether or not to insert a PEG. Terry had gone into a hospice for a short respite stay but had...

Dear all I recently posted on this site asking for advice on whether or not to ...

Angel5805

•2 years ago

17 Replies

Wet & Dry Toilets and Bathroom Hoist

HI Everyone, We are building a new ground floor wetroom and bedroom for my husband with PSP. I have been looking at wet/dry toilets and would be grateful of...

HI Everyone, We are building a new ground floor wetroom and bedroom for my husb...

Millidog

•2 years ago

8 Replies

Dry eyes

My husband has dry eyes from PSP and it seems every time we fly, he has a bad reaction for about four days. Does the flying make his eyes worse?

My husband has dry eyes from PSP and it seems every time we fly, he has a bad r...

santianna

•2 years ago

5 Replies

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Condition getting worse, fast

I really don’t know what to do. My husband has deteriorated in the last week, he’s had two falls and I wasn’t able to get him up, he’s struggling to get in and...

I really don’t know what to do. My husband has deteriorated in the last week, he...

Redjune1

•2 years ago

10 Replies

Tube feeding.

My husband opted for a PEG, or PIG, as his type was called. We were provided with liquid food and I was trained how to feed him. It extended his life by...

My husband opted for a PEG, or PIG, as his type was called. We were provided wi...

Robbo1

•2 years ago

6 Replies

Love and tender touch is important.

Hi friends just wanted to post something which I have observed.My mum has PSP and is slowly getting a bit more weaker. I am her daughter and only carer. It...

Hi friends just wanted to post something which I have observed.My mum has PSP a...

Cinderella80

•2 years ago

25 Replies

Rehab

Hi Everyone My husband has PSP , had a heart attack a few days ago. He has recovered well but still in hospital. Cardiac Consultant is happy to...

Hi Everyone My husband has PSP , had a heart attack a few days ago. He has r...

Jibjh

•2 years ago

2 Replies

WhatsApp group

Hi everyone Here is a link to join the WhatsApp group that I and some others are in https://chat.whatsapp.com/L9zXKeGxQAm0Nj5aDesYM3 Thanks Martin

Hi everyone Here is a link to join the WhatsApp group that I and some others a...

MartinHLondon

•2 years ago

Be the first to reply

Saying hello on behalf of my mum who has PSP and her daughter - primary carer

They live in South Manchester and are struggling. My 93 yr old mum was officially diagnosed with PSP in hospital around August 2022 midway through 12 week...

They live in South Manchester and are struggling. My 93 yr old mum was official...

Lookingoutformum

•2 years ago

12 Replies

Plucked up the courage to say "Hello"

Hi all, Although I have been a member of this forum for 3 years I have never had the nerve to actually post anything, but with the help of my son I have...

Hi all, Although I have been a member of this forum for 3 years I have never h...

QNCS

•2 years ago

7 Replies

PSP WhatsApp group update

Hi I hope I am not violating any group or message board rules but there was some interest in my post yesterday about setting up a WhatsApp group. I am not...

Hi I hope I am not violating any group or message board rules but there was some...

MartinHLondon

•2 years ago

Be the first to reply

advice

Good Evening thank you for letting me join the group , mums Wright side arm getting very week , she holds it for support , how can we help to improve her...

Good Evening thank you for letting me join the group , mums Wright side arm ge...

SuperMun

•2 years ago

3 Replies

behavior changes

My mom is in a nursing home, along with PSP she also has a lot of pain due to arthritis and back issues. She has become so mean and bitter. She lashes out,...

My mom is in a nursing home, along with PSP she also has a lot of pain due to ar...

ErinKH

•2 years ago

9 Replies

my first post here

Hi everyone, Glad I found this community where people share their experiences which are very useful to others who are going through the same path. Myself and...

Hi everyone, Glad I found this community where people share their experiences w...

Dpriy

•2 years ago

4 Replies

PSP WhatsApp group

My mother is living in Essex, UK with PSP and my father is her full time carer with support from my sister and myself. Reading the stories of so many people...

My mother is living in Essex, UK with PSP and my father is her full time carer w...

MartinHLondon

•2 years ago

10 Replies

Sad to report the demise of my beloved wife 72 years old

Dear members With a heavy heart, I wish to report the sad demise of my beloved wife in the early hours of 10th Oct. Just for the information of...

Dear members With a heavy heart, I wish to report the sad demise of my bel...

kpmdas

•2 years ago

37 Replies

Feel like running away.

Hi friends I'm fed up. Mum got up at half 8 in the morning and has been on the toilet for 3hours. I washed and showered her.Then fed her nothing much was...

Hi friends I'm fed up. Mum got up at half 8 in the morning and has been on the ...

Cinderella80

•2 years ago

11 Replies

Malnutrition

Hi Everyone. My mother is 6 years into this cruel illness. She is currently in respite palliative care. In recent weeks we have experienced a massive...

Hi Everyone. My mother is 6 years into this cruel illness. She is currently i...

MarieFW

•2 years ago

13 Replies

Mom is finally at peace after struggling with PSP for years

My mom left for her heavenly abode on August 12th after bravely fighting PSP for 7 long years. I miss her so much all the time. The world is not the same...

My mom left for her heavenly abode on August 12th after bravely fighting PSP for...

pankaj911

•2 years ago

25 Replies

Tongue olympics

A new one today I noticed. Trying to give mum a calorie laden desert and she managed one teaspoon, before a bad choking episode .In doing this I noticed...

A new one today I noticed. Trying to give mum a calorie laden desert and she...

MRSYafffle

•2 years ago

4 Replies

Final Journey

My husband, Ray, completed his Corticobasal Syndrome journey last Friday. I was able to keep him home and avoid COVID and aspiration. Mission accomplished!...

My husband, Ray, completed his Corticobasal Syndrome journey last Friday. I was...

Sebuly14

•2 years ago

37 Replies

My father's journey

Hi I am from NZ and am reaching out to a larger community to get some advice. My father had slowed down needing to stop while walking. In 2019, he got a...

Hi I am from NZ and am reaching out to a larger community to get some advice. ...

OllieFisher1

•2 years ago

6 Replies

Compassion fatigue

Hi friends hope you are all keeping strong. I have been ooloking into something called compassion fatigue.It makes so much sense to me. Professional carers...

Hi friends hope you are all keeping strong. I have been ooloking into something...

Cinderella80

•2 years ago

6 Replies

My dad

My dad has CBD. He has now lost his speech and mobility. My mum does everything for him from feeding, toileting, dressing etc etc. He has started to cough a...

My dad has CBD. He has now lost his speech and mobility. My mum does everything ...

Stormtrooper4

•2 years ago

7 Replies

Your Opinions Matter

Hello friends -- I am turning to you, because I have trusted you all for so many years. I am at a crossroads, and it isn't that I haven't prepared - I had...

Hello friends -- I am turning to you, because I have trusted you all for so many...

bazooka111

•2 years ago

25 Replies

Does PSP respond to the drug Levadopa?

I thought the standard test for Parkinson’s disease was Levadopa . If you respondeded to Levadopa you had Parkinson’s. If you did not respond the patient...

I thought the standard test for Parkinson’s disease was Levadopa . If you res...

TeeAnn

•2 years ago

9 Replies

Re my post looking for help

I would just like to thank everyone who answered my question anout the dietitians trying to push for mum to be peg fed. It breaks my heart writing this but mum...

I would just like to thank everyone who answered my question anout the dietitian...

Beckany

•2 years ago

12 Replies

My poor mum...

So mum is still hanging in there, I'm not sure how exactly and it is hard to watch but must be so much worse for her. We have no communication, not a word...

So mum is still hanging in there, I'm not sure how exactly and it is hard to wat...

MRSYafffle

•2 years ago

16 Replies

Safety Button / Alarm Button

Morning all, My dad is my Mums carer and they both live with me and my own family. So most of the time someone from my family is around. My concern is, my...

Morning all, My dad is my Mums carer and they both live with me and my own fami...

NetballMagic

•2 years ago

10 Replies

PEG insertion

My husband was diagnosed with likely CBD nearly 2 years ago and has been incontinent, immobile and unable to speak for over a year. He has been eating food...

My husband was diagnosed with likely CBD nearly 2 years ago and has been inconti...

Angel5805

•2 years ago

10 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for October 2022

My husband’s trials are over

﻿Wet & Dry Toilets and Bathroom Hoist

Dry eyes

Condition getting worse, fast

﻿Tube feeding.

﻿Love and tender touch is important.

Rehab

WhatsApp group

Saying hello on behalf of my mum who has PSP and her daughter - primary carer

Plucked up the courage to say "Hello"

PSP WhatsApp group update

advice

behavior changes

my first post here

PSP WhatsApp group

Sad to report the demise of my beloved wife 72 years old

﻿Feel like running away.

﻿Malnutrition

Mom is finally at peace after struggling with PSP for years

﻿Tongue olympics

Final Journey

My father's journey

﻿Compassion fatigue

My dad

Your Opinions Matter

Does PSP respond to the drug Levadopa?

Re my post looking for help

My poor mum...

Safety Button / Alarm Button

PEG insertion

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive

Wet & Dry Toilets and Bathroom Hoist

Tube feeding.

Love and tender touch is important.

Feel like running away.

Malnutrition

Tongue olympics

Compassion fatigue