Posts - PSP Association | HealthUnlocked

PSP Association

9,657 members•11,567 posts

Sort posts by:

Confused

I understand that PSP symptoms are random but I’ve just witnessed my husband pooing pellets on the floor. We’re struggling with his bladder already and he’s...

I understand that PSP symptoms are random but I’ve just witnessed my husband poo...

Darlingtonian

•23 hours ago

7 Replies

sleep trouble

my wife with PSP hasn’t slept well for awhile, but recently she is going to bed at midnight (later than she did before) and getting up by 3am. Anyone else have...

my wife with PSP hasn’t slept well for awhile, but recently she is going to bed ...

Husbandof

•5 days ago

11 Replies

My poor mum

Hi I just need to have a rant and I'm sure you will understand.mum has been diagnosed with psp 2 years ago Mum is in a residential home ,but unfortunately her...

Hi I just need to have a rant and I'm sure you will understand.mum has been diag...

Blitzford72

•5 days ago

13 Replies

Want to take advantage of all our features? Just log in!

CBD dead leg

Hi , my husband was diagnosed with CBD in 2021 . Symptoms were maybe 2020. His left side off his body was effected ,he has been suffering for cramps in his...

Hi , my husband was diagnosed with CBD in 2021 . Symptoms were maybe 2020. His ...

Kayleebaby124

•5 days ago

4 Replies

Thank you to all

Dear all Just to say thank you to this forum regarding all help and advice. My dad passed Sunday 3rd November. I am grateful it was quick as we believed he...

Dear all Just to say thank you to this forum regarding all help and advice. My ...

CJFreckles

•6 days ago

13 Replies

Faces and Voices Video

Further to my original post, I have included links to provide you with two examples of videos created for the Faces and Voices Campaign. Your submissions can...

Further to my original post, I have included links to provide you with two examp...

daddyt

•6 days ago

3 Replies

PSP and hearing

My husband has PSP and suddenly his heating has deteriorated. I have GP coming later to see if it is wax but am worried it might be a worsening of his PSP....

My husband has PSP and suddenly his heating has deteriorated. I have GP coming l...

Glutscone

•6 days ago

5 Replies

End Parkinson’s Meds?

Hi. My mum has PSP and has just moved into residential care. She is starting to get problems with swallowing. She has had the classic diagnosis journey -...

Hi. My mum has PSP and has just moved into residential care. She is starting to ...

rg13rg

•7 days ago

9 Replies

FACES and VOICES

This is for all caregivers—past and present, patients, family, friends, and other loved ones. Many of you know I have been banging the PSP-CBD awareness...

This is for all caregivers—past and present, patients, family, friends, and othe...

pspchronicles

•7 days ago

9 Replies

does being palliative mean you no longer count ??

Hi all, I am just putting this out there to see what people’s opinions are of a recent request I made for a GP to visit. My husband is end stage CBD and...

Hi all, I am just putting this out there to see what people’s opinions are of a ...

Blacklabmum

•8 days ago

18 Replies

Leaving

Morning all it is now 6 months since my darling husband and soulmate passed away . Life without him is awful but I have to remember he’s at peace now. I want...

Morning all it is now 6 months since my darling husband and soulmate passed away...

45purple

•8 days ago

8 Replies

Thank you PSP Association

My lovely husband passed away recently after battling the insidious disease that is PSP for at least six years. Although heartbroken, I do take comfort in...

My lovely husband passed away recently after battling the insidious disease that...

Joanne19

•8 days ago

9 Replies

ghjijk

tyyghh

angy24

•9 days ago

1 Reply

End of PSP era.

A couple of weeks ago my father passed, putting an end to a 5 year journey that impacted him mostly but the family too. He is resting now and his final moments...

A couple of weeks ago my father passed, putting an end to a 5 year journey that ...

jamescrra

•9 days ago

16 Replies

methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up

FYI: Found in the web: “ methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up Scientists at the UK...

FYI: Found in the web: “ methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic an...

BluesHealer

•16 days ago

2 Replies

methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up

FYI: Found in the web: “ methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up Scientists at the UK...

FYI: Found in the web: “ methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic an...

BluesHealer

•16 days ago

3 Replies

The end of PSP journey

On Tuesday October 29th my mother passed away and PSP journey has ended. The journey of watching someone you love struggle with health issues can bring a mix...

On Tuesday October 29th my mother passed away and PSP journey has ended. The jo...

Blueclouds07

•17 days ago

38 Replies

Is there a family link with PSP?

My mum died in 2022, having been diagnosed with PSP in 2020. She had originally been diagnosed with Parkinsons, I think around 2017. My grandmother, who died...

My mum died in 2022, having been diagnosed with PSP in 2020. She had originally ...

Blacksheep143

•17 days ago

18 Replies

Significant Weight Loss

Hi all, My Mum is 73 with PSP and in a nursing home. Her latest weight was 37.2Kg😳 She has lost 3.7Kg in a month. She is on a puréed diet and thickened...

Hi all, My Mum is 73 with PSP and in a nursing home. Her latest weight was 37.2...

GeorgeMMXVI

•19 days ago

12 Replies

Should I consider tracheostomy

Hi. My dad is in the advanced stage of PSP. He has been having more and more difficulty lately moving and swallowing and doing most things. We rushed him to...

Hi. My dad is in the advanced stage of PSP. He has been having more and more di...

DorisV

•24 days ago

7 Replies

PSP & anxiety

My wife was diagnosed about a year ago but has had symptoms such as voice problems for several years. Her social anxiety is extreme; she can barely tolerate...

My wife was diagnosed about a year ago but has had symptoms such as voice proble...

Husbandof

•26 days ago

7 Replies

3 days of complete remission of PSP symptoms

3 days of complete remission of PSP symptoms Hi, everybody! I’m still trying to find out how and why this happened to me. If someone of you went through a...

3 days of complete remission of PSP symptoms Hi, everybody! I’m still trying...

BluesHealer

•27 days ago

6 Replies

Sharing my thoughts

I don't have any more questions for this forum. It has been so supportive over the last few years. My husband is, I hope, entering the last phase of this...

I don't have any more questions for this forum. It has been so supportive over ...

JAK63

•28 days ago

26 Replies

communication

my poor mum has reached the stage where conversation is nigh on impossible….. yet she knows exactly what she wants to say!!! I’ve had phone calls from her...

my poor mum has reached the stage where conversation is nigh on impossible….. ...

Girvangal

•28 days ago

14 Replies

Resisting Carers

Anyone else had experience with one parent resisting care for the other parent? Trying to manage everything themselves and failing? My mum diagnosed with PSP...

Anyone else had experience with one parent resisting care for the other parent? ...

AnishH

•1 month ago

11 Replies

Freezing up all over the body

Hello all. My dad has only officially been diagnosed with Corticobasal Syndrome from Feb. I had my suspicions since May 2023 due to his Parkinsons rapidly...

Hello all. My dad has only officially been diagnosed with Corticobasal Syndrom...

CJFreckles

•1 month ago

12 Replies

Golfinggirl

My husband has badd edema his legs and feet are very swollen he also has pomphloxy which are bad blisters on his feet and hands. Does anyone else have this?

My husband has badd edema his legs and feet are very swollen he also has pomphlo...

G0lfinggirl

•1 month ago

6 Replies

Urinary Retention

A new experience for us this week. My wife suffered urinary retention for the first time and it went on for 14 hours before a combination of Paramedics and...

A new experience for us this week. My wife suffered urinary retention for the fi...

Wombatz

•1 month ago

13 Replies

Grandpa refusing to eat and drink

Good evening all, my grandpa was diagnosed with PSP 7 years ago. Over the years his mobility, speech and numerous other things have been affected, although he...

Good evening all, my grandpa was diagnosed with PSP 7 years ago. Over the years ...

Darcydoo1

•1 month ago

8 Replies

guide for diagnosing atypical Parkinson’s

This guide is from the USA from CurePSP and is aimed at doctors but may be something for you to share with your GP or neurologist if you are still somewhere in...

This guide is from the USA from CurePSP and is aimed at doctors but may be somet...

messier

•1 month ago

1 Reply

Write a post or ask a question

Search posts

Latest poll

See all polls

What are your main concerns as a carer?

Vote

Topics

All posts(144)

All things PSP Association(144)

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.

Posts - PSP Association | HealthUnlocked

PSP Association

Confused

sleep trouble

My poor mum

CBD dead leg

Thank you to all

Faces and Voices Video

PSP and hearing

End Parkinson’s Meds?

FACES and VOICES

does being palliative mean you no longer count ??

Leaving

Thank you PSP Association

ghjijk

End of PSP era.

methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up

methazolamide (MTZ) - acetazolamide (ATZ) - Carbonic anhydrase inhibitors protect against tau protein build-up

The end of PSP journey

Is there a family link with PSP?

Significant Weight Loss

Should I consider tracheostomy

PSP & anxiety

3 days of complete remission of PSP symptoms

Sharing my thoughts

communication

Resisting Carers

Freezing up all over the body

Golfinggirl

Urinary Retention

Grandpa refusing to eat and drink

guide for diagnosing atypical Parkinson’s

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive