Posts - PSP Association | HealthUnlocked

PSP Association

9,728 members•11,604 posts

All posts for October 2023

Wash & Dry toilets the benefits?

Hi All Our OT has advised me to consider a Wash & Dry Toilet for my wife who has PSP. We are having a wetroom installed. We have been told it will help to...

Hi All Our OT has advised me to consider a Wash & Dry Toilet for my wife who ha...

•1 year ago

PEG Feeding

Hi....my step mum has PSP, she is bed bound and has carers come into her home 3 times a day to help my dad who is her full time carer. She is still able to eat...

Hi....my step mum has PSP, she is bed bound and has carers come into her home 3 ...

•1 year ago

agitation in PSP

hello my mum was diagnosed around 4 years ago and has slowly developed all of the common symptoms. We have recently moved her into a nursing home after being...

hello my mum was diagnosed around 4 years ago and has slowly developed all of th...

•1 year ago

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Jaw muscles

Following on from a message on the forum yesterday. Has anyone any experience on the success (or not) of Botox injections in the jaw to relax the muscles to...

Following on from a message on the forum yesterday. Has anyone any experience o...

•1 year ago

Clenched Jaw

My wife has displayed, over the past few days a reluctance to take food even in the form of puree. This morning she seemed unable to open her mouth and has...

My wife has displayed, over the past few days a reluctance to take food even in ...

•1 year ago

heavy heart

it is with a very heavy heart I write on here my mum gained her wings at 3am today. After all the years of caring for her and visiting her in the care home I...

it is with a very heavy heart I write on here my mum gained her wings at 3am tod...

•1 year ago

had to

well we put dad in the nursing home today. PSP is awful.

well we put dad in the nursing home today. PSP is awful.

•1 year ago

community deprivation of liberty order

Hi all, I need to find out if anyone has heard of or has a community deprivation of liberty order out on their loved one? My lovely husband has been living...

Hi all, I need to find out if anyone has heard of or has a community deprivatio...

•1 year ago

Kleiner Trost

Liebe Forum-Mitglieder, ich habe dieses Forum leider erst jetzt gefunden. Ich habe meinen an PSP erkrankten Mann einige Jahre gepflegt, bis er im August dieses...

Liebe Forum-Mitglieder, ich habe dieses Forum leider erst jetzt gefunden. Ich ha...

•1 year ago

Decline

Mum has had all oral meds/fluids/nutrition stopped since last Friday, swallow tests showed she had lost her swallowing reflex altogether and was aspirating...

Mum has had all oral meds/fluids/nutrition stopped since last Friday, swallow te...

•1 year ago

Night Owl Dad and Falls

Hi all My dad has carers who come 3x times a day. Double up too. He is in pads and his care needs are attended to him on his bed. He does not like using a...

Hi all My dad has carers who come 3x times a day. Double up too. He is in pads...

•1 year ago

caffeine and anxiety

hi there .. just to mention. should any of you suffer anxiety .. the first thing you should eliminate from your body is caffeine. please be aware it’s not...

hi there .. just to mention. should any of you suffer anxiety .. the first thin...

•1 year ago

CBD - my Mum's journey so far

Hello - I am so grateful to have found this group as I have felt alone given this disease is rare and even the health care professionals are not aware of it....

Hello - I am so grateful to have found this group as I have felt alone given thi...

•1 year ago

finally at rest

My lovely dad, Tom, passed away very peacefully on Friday 13th October 2023. I will share more of his story at some point to explain his journey, as I know I...

My lovely dad, Tom, passed away very peacefully on Friday 13th October 2023. I w...

•1 year ago

Finger pointing. Normal?

Hi i posted on here a few months ago and the help I received was incredible. Thank you all. My Nan has late stage PSP. She is unable to speak, she can’t...

Hi i posted on here a few months ago and the help I received was incredible. Th...

•1 year ago

Update on mum

Since my last post things have deteriorated quickly, mums swallowing has got a lot worse and she has choked twice and has crackles on her lungs which she has...

Since my last post things have deteriorated quickly, mums swallowing has got a l...

•1 year ago

STEM CELL THEROPY

Thanks everyone who posted the last time I asked this question,but the replies where five to seven years old. Has anyone had stem cell treatment recently and...

Thanks everyone who posted the last time I asked this question,but the replies w...

•1 year ago

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Hearing problem

As anyone else had hearing problem with PSP my husband as been in hospital for a chest infection also kidney infection then got Covid he’s now lost all his...

As anyone else had hearing problem with PSP my husband as been in hospital for a...

•1 year ago

palliative care

hi. My mum Frances is now having palliative care for CBD. She is cognitive but very little swallow and so very little strength left to dress/walk etc. sadly no...

hi. My mum Frances is now having palliative care for CBD. She is cognitive but v...

•1 year ago

MISSION ACCOMPLISHED!

Mission accomplished, first Half marathon on behalf of PSPA completed. Well done James.

Mission accomplished, first Half marathon on behalf of PSPA completed. Well don...

•1 year ago

Running for PSPA

So proud of my middle grandson, James Weston as he ran in the Royal Parks Half Marathon this morning in aid of the PSPA, as part of his preparation for running...

So proud of my middle grandson, James Weston as he ran in the Royal Parks Half M...

•1 year ago

cause of PSP

my friend has PSP. He is 69 years old. He lived in the Australian bush for over 30 years and drank water every day from his old cement water tanks. Could this...

my friend has PSP. He is 69 years old. He lived in the Australian bush for over ...

•1 year ago

peg feeding tubes.

hello, I am looking for a bit of advice. My husband has Psp diagnosed about 5 years ago, he is really starting to struggle now. We were up at the hospital...

hello, I am looking for a bit of advice. My husband has Psp diagnosed about 5 y...

•1 year ago

Evac Chair available free for collection

Would anyone like an Evac chair which we can no longer use? They're good for small flights of stairs indoors. Only used a few times. I am based in N London and...

Would anyone like an Evac chair which we can no longer use? They're good for sma...

•1 year ago

Advice, reassurance or tips!

Hi all, I have previously posted regarding CHC funding, our experience and the decision provided which was a small contribution for funded nursing care....

Hi all, I have previously posted regarding CHC funding, our experience and the...

•1 year ago

A Song that may resonate with PSP Carers.

Hi Friends, I've just heard a new song by Michael Bolton called Safe. https://m.youtube.com/watch?v=yUKP_8Tst1s If ever there was an anthem for all the PSP...

Hi Friends, I've just heard a new song by Michael Bolton called Safe. https://m....

•1 year ago

CHC Funded Carers Role at home-what does your carer do?

Hi, My husband has been SO very fortunate to be awarded 50 hours (mainly 9am-6pm) CHC funded care at home. Myself and our Neuro nurse worked hard to prepare...

Hi, My husband has been SO very fortunate to be awarded 50 hours (mainly 9am-6pm...

•1 year ago

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