Posts - PSP Association | HealthUnlocked

PSP Association

9,255 members • 11,351 posts

All posts for November 2023

Accessing extra care (UK)

Hi. This is a question for UK-based people who may have some advice or direction for me! My Dad is declining. After much exploration, we feel we have...

Hi. This is a question for UK-based people who may have some advice or directio...

Koalagal

•5 months ago

11 Replies

Neck dystonia and swallow ability

Hi everyone. Just wondering when/if your loved ones developed neck dystonia/retrocollis and how it effected their swallow ability please? My dad is very...

Hi everyone. Just wondering when/if your loved ones developed neck dystonia/retr...

CliDol

•5 months ago

6 Replies

Parkinson's nurse Info needed

Hi all, firstly I would like to say thank you for all the posts that have been shared on this forum regarding PSP. They have been so helpful in trying to...

Hi all, firstly I would like to say thank you for all the posts that have been s...

Loveispatient23

•5 months ago

23 Replies

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loss of speech

Hello, My dad was diagnosed with PSP in May of this year and has deteriorated quite a bit since (we live in the northeast of England) He is now in a care...

Hello, My dad was diagnosed with PSP in May of this year and has deteriorated ...

Calamity_j

•5 months ago

27 Replies

Summary article from CurePSP

I've just read this article called Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus...

I've just read this article called Best Practices in the Clinical Management of ...

Bergenser

•5 months ago

7 Replies

Robert

Robert was diagnosed with Parkinson’s in 2018 PSP in 2021 progression was slow at first. Last year Robert was walking with a cane and dragging his feet. In...

Robert was diagnosed with Parkinson’s in 2018 PSP in 2021 progression was slow...

Wrski

•5 months ago

20 Replies

My Warriar gained his angel wings this morning

thank you to everyone on this group for all your help, advice and understanding. Unfortunately my dad lost his battle to PSP this morning at home. We are...

thank you to everyone on this group for all your help, advice and understanding....

Khalissi

•5 months ago

32 Replies

DIAGNOSIS

I have had epil since age 29. Just happened all of a sudden, no reason. I’ve had many seizures and also was diagnosed with Major Neuro. cognitive...

I have had epil since age 29. Just happened all of a sudden, no reason. I’v...

Cinjav

•5 months ago

3 Replies

PSPA Leicestershire Support Group November Meet Up

If anyone can make it we'll see you there.... We hope you can come along and join our friendly group members for tea, coffee and cakes. Saturday, 18 November...

If anyone can make it we'll see you there.... We hope you can come along and jo...

Zerachiel

•5 months ago

3 Replies

Oxygen saturation

Based on our experiences the last few days, I wondered if low oxygen saturation is a common issue in PSP?My husband was taken to A&E in an ambulance on Monday...

Based on our experiences the last few days, I wondered if low oxygen saturation ...

Bergenser

•5 months ago

5 Replies

Care Home response

Please can I thank everyone who sent a response to my original post. It is encouraging to hear from so many of you who have similar stories. My husband is...

Please can I thank everyone who sent a response to my original post. It is encou...

Wybert

•5 months ago

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donepezil and CBD

Good morning! My husband is in the late stages of CBD, which for those of you who don’t know, is a close relation to PSP. He is totally bed/wheelchair bound...

Good morning! My husband is in the late stages of CBD, which for those of you w...

Indiana-Girl

•5 months ago

7 Replies

Amazing progress

hi all - since my mum came out of hospital end of August I never thought she would walk again - with her PSP being accelerated by 4 weeks in bed. I feared...

hi all - since my mum came out of hospital end of August I never thought she wou...

NicolaD15

•6 months ago

4 Replies

Donepezil as an aid for PSP

Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his...

Hi all you good people, A couple of weeks ago a fellow traveller here wrote abo...

Richard33

•6 months ago

9 Replies

Nursing home

Hi all, My dad went A&E yesterday for a chest infection and a cough he cannot shift. He was discharged because the doctor believed he would be ‘better’ at...

Hi all, My dad went A&E yesterday for a chest infection and a cough he cannot ...

Khalissi

•6 months ago

15 Replies

My mother’s PSP , an update

Last Wednesday, we took my mom to ER, she was having diarrhea and was severely dehydrated and was having sever electrolyte imbalance. They decided to admit...

Last Wednesday, we took my mom to ER, she was having diarrhea and was severely ...

Blueclouds07

•6 months ago

8 Replies

My husband has lost his fight with this awfull disease

He was diagnosed with parkansin 10 yrs ago then 3 month later 5 because of guestions I asked why was he falling backwards and why was his eyes closed all the...

He was diagnosed with parkansin 10 yrs ago then 3 month later 5 because of guest...

Baily2357

•6 months ago

11 Replies

Any examples of genetic cases?

Hi all, My dad passed away from PSP 12-months away after being diagnosed 2-years prior. I found out today, his brother who lives in Australia has also been...

Hi all, My dad passed away from PSP 12-months away after being diagnosed 2-yea...

Sammount

•6 months ago

24 Replies

Progression ,still no cofirmation

My wife is starting to deteriorate quite rapidly now, but no one in this area of Lincolnshire seems to know anything called PSP and trying to get the...

My wife is starting to deteriorate quite rapidly now, but no one in this area of...

autex2000

•6 months ago

12 Replies

Psp warrior has left the building

My beautiful strong mumma has grown her wings and been freed from the stronghold that is PSP. I would just like to thank this community for all advice tips and...

My beautiful strong mumma has grown her wings and been freed from the stronghold...

Tillytott54

•6 months ago

20 Replies

Care Home

Tomorrow my husband moves to a care home. Only 2 months ago he could walk unaided, talk and eat without help. He was diagnosed in December 2022. This...

Tomorrow my husband moves to a care home. Only 2 months ago he could walk unaide...

Wybert

•6 months ago

18 Replies

HOPE!

Click on the kink in my previous post. It looks long, but it will take you to a site well worth the reading. Tim

Click on the kink in my previous post. It looks long, but it will take you to a ...

daddyt

•6 months ago

1 Reply

HOPE!

https://l.facebook.com/l.php?u=https%3A%2F%2Fneurosciencenews.com%2Fpsp-genetics-neurology-25154%2F%3Ffbclid%3DIwAR3gVZvX5_9OqnijyVQUpinZkA01XzMa0YQnHUBhb5YhPn3

https://l.facebook.com/l.php?u=https%3A%2F%2Fneurosciencenews.com%2Fpsp-genetics...

daddyt

•6 months ago

14 Replies

garage conversion

This is my first post, so apologies if I am not following correct protocol. My wife (73) was diagnosed with atypical Parkinson’s, probably PSP, in September;...

This is my first post, so apologies if I am not following correct protocol. My w...

Pspuser

•6 months ago

24 Replies

My beautiful Nana is no longer suffering

Hello… first of all, I want to say thanks to everyone on here who have helped me, whether that is by directly answering my posts or posting something before...

Hello… first of all, I want to say thanks to everyone on here who have helped me...

ilovedogs7

•6 months ago

16 Replies

salts team

mum had an appointment with salts team yesterday she was fed different foods and drinks whilst having X-rays to see how she is swallowing. They found every...

mum had an appointment with salts team yesterday she was fed different foods and...

Flowersinyouhair

•6 months ago

6 Replies

Oral care tip

Just to share in case it helps someone: My mother has very advanced disease and her tongue doesn’t move well; she has difficulty swallowing and her mouth is...

Just to share in case it helps someone: My mother has very advanced disease and...

Martina_MP

•6 months ago

4 Replies

Sending warm wishes to my friends

I am not sure how many still are in this forum that I connected with — and LEANED on during my journey of caring for my sweet momma —- but, I wanted to stop in...

I am not sure how many still are in this forum that I connected with — and LEANE...

bazooka111

•6 months ago

35 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for November 2023

Accessing extra care (UK)

Neck dystonia and swallow ability

Parkinson's nurse Info needed

loss of speech

Summary article from CurePSP

Robert

My Warriar gained his angel wings this morning

DIAGNOSIS

PSPA Leicestershire Support Group November Meet Up

Oxygen saturation

Care Home response

donepezil and CBD

Amazing progress

Donepezil as an aid for PSP

Nursing home

My mother’s PSP , an update

My husband has lost his fight with this awfull disease

Any examples of genetic cases?

Progression ,still no cofirmation

Psp warrior has left the building

Care Home

HOPE!

HOPE!

garage conversion

My beautiful Nana is no longer suffering

salts team

Oral care tip

Sending warm wishes to my friends

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive