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PSP Association

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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

•9 days ago

6 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

•16 days ago

12 Replies

Vaccination

I was a physiotherapist, retired many,many years ago before I heard of PSP. Now I have PSP. I wondered whether any of you...

I was a physiotherapist, retired many,many years ago before I hear...

eilcod

•26 days ago

11 Replies

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Vaccination

I was a physiotherapist, retired many,many years ago before I heard of PSP. Now I have PSP. I wondered whether any of you...

I was a physiotherapist, retired many,many years ago before I hear...

eilcod

•26 days ago

4 Replies

Dad’s 8 year PSP journey at its end

My father was diagnosed with PSP in 2016 .. which was post a few backward falls .. I had noticed a few changes besides balance issues like not blinking for...

My father was diagnosed with PSP in 2016 .. which was post a few backward falls ...

Dravid100

•2 months ago

25 Replies

Grief is my middle name

Follows me through ebbs and flow A constant companion on the road A dark shadow behind Enveloping me in sweet embrace Come closer my darling He whispers...

Follows me through ebbs and flow A constant companion on the road A dark shado...

Warrioragainstpsp

•3 months ago

2 Replies

PSP/CBD Symposium - Saturday, June 29, 10am-3pm Pacific (US time)

REGISTRATION IS NOW OPEN Brain Support Network and Stanford's Movement Disorders Center are co-hosting this Progressive Supranuclear Palsy/Corticobasal...

REGISTRATION IS NOW OPEN Brain Support Network and Stanford's Movement Disorder...

rriddle

•5 months ago

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Orangetrunk

This is the first time I've posted. I live in California and heard about HealthUnlocked so thought I'd give it a try. My husband of 53 years has been...

This is the first time I've posted. I live in California and heard about Health...

Orangetrunk

•7 months ago

9 Replies

Onset of severe tremor

My wife was diagnosed with PSP late 2021.She broke her hip in early February whilst taking part in a PD Warriors exercise class. She has been transferred to a...

My wife was diagnosed with PSP late 2021.She broke her hip in early February whi...

Wombatz

•8 months ago

21 Replies

CBD decline

Hi, Don’t often post as time gets away with me, but coming on hear to vent a bit ;-) So mum has CBD diagnosed 2020 so has probably had symptoms for 4+ years....

Hi, Don’t often post as time gets away with me, but coming on hear to vent a bit...

Araucana

•8 months ago

22 Replies

Diagnosis received yesterday.

My lovely mum finally got a diagnosis yesterday after approximately 5 years of us noticing symptoms. Her consultant was amazing and I could have cried when he...

My lovely mum finally got a diagnosis yesterday after approximately 5 years of u...

Italiansunsets

•9 months ago

8 Replies

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 ...

KingKenny73

•1 year ago

15 Replies

Phlegm with blood

Adoey here, I haven't written in a while. I'm having a problem with Phlegm. Lately, I'm coughing phlegm with blood. Has anyone had this happen to them?...

Adoey here, I haven't written in a while. I'm having a problem with Phlegm. La...

Adoey

•1 year ago

8 Replies

Progression

It is 2:00 am and I am sitting here wide awake . My sleep cycle is all messed up, some nights I don't sleep at all but most nights I can get sleep around 4:00...

It is 2:00 am and I am sitting here wide awake . My sleep cycle is all messed up...

horseandwolf

•1 year ago

4 Replies

Our CBD Journey With Dad

I would like to start this off with a brief insight to our CBD journey. I know we all have had to go through very similar caring procedures! But, I need to...

I would like to start this off with a brief insight to our CBD journey. I know w...

lilot

•1 year ago

2 Replies

behaviour and PSP

hi there, I am new to this group ..and looking for help in understanding this disease.. My husband was diagnosed October 2022.. He has the typical symptoms...

hi there, I am new to this group ..and looking for help in understanding this di...

Dancing2day

•1 year ago

14 Replies

End stages of PSP

Because it took so long for Mom to get a diagnosis of PSP, we can only guess how long she has suffered with it. Her symptoms of visual problems and feeling...

Because it took so long for Mom to get a diagnosis of PSP, we can only guess how...

anniesfirst

•2 years ago

5 Replies

recently diagnosed with PSP

I’m hoping to connect with others who have this disease. I want to learn more about PSP and what it does to my body and functioning how it will affect me...

I’m hoping to connect with others who have this disease. I want to learn more a...

Johno12345

•2 years ago

4 Replies

Nursing home- what to look for in making a choice?

Hi all, Dad (81) has been diagnosed with PSP. We now realise he has had this for some years, but was misdiagnosed. Common theme, I know. It of background......

Hi all, Dad (81) has been diagnosed with PSP. We now realise he has had this for...

Nicgcc

•2 years ago

5 Replies

Preparing for end of life care - what to discuss and where to get help

Hi, As my Mum approaches the end of journey with PSP she wants to prepare her end of life care while she can just about communicate. What did you discuss...

Hi, As my Mum approaches the end of journey with PSP she wants to prepare her e...

Jkc1

•2 years ago

22 Replies

BBC Article Sept 2021. - https://www.bbc.co.uk/news/uk-england-hampshire-58641372.amp

Afternoon Further to the trial mentioned in the above BBC news link, I was wondering if anybody had heard any brief update on the initial observations or...

Afternoon Further to the trial mentioned in the above BBC news link, I was wond...

Sweenstar

•2 years ago

2 Replies

Article in Karger Medical - Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: A Case Report

Good evening (Friend of a PSP sufferer). https://www.karger.com/Article/FullText/503864 I came across the above report in Karger Medical at the weekend and...

Good evening (Friend of a PSP sufferer). https://www.karger.com/Article/FullT...

Sweenstar

•2 years ago

15 Replies

Rates of PSP in Maghull, Liverpool

hi, My father had PSP , at the time of his diagnosis two other people who lived in neighbouring roads - also got diagnosed with PSP (similar age ) I’ve...

hi, My father had PSP , at the time of his diagnosis two other people who live...

Dolly9to5

•2 years ago

20 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

Coming Soon - New HealthUnlocked

Hi Everyone We know how important HealthUnlocked is to the PSP on line community so we just wanted to let you all know that HealthUnlocked will be launching...

Hi Everyone We know how important HealthUnlocked is to the PSP on line commun...

Hidden

•11 years ago

8 Replies

Northamptonshire Local Group Meeting. Saturday 30th March at 2.30

The Northamptonshire Local Group meet on Saturday 30th March, 2.30 at Grangefield Residential Care Home in Earls Barton. As always this will be a friendly and...

The Northamptonshire Local Group meet on Saturday 30th March, 2.30 at Grangefiel...

PSPA_CameronW

•12 years ago

5 Replies

PSPA Regional Open Meeting in Preston - 28th March, 12.30 - 4pm

The 2nd North West Open Meeting takes place next Thursday at the Barton Grange Hotel, Barton near Preston. The aim of the meeting is to provide an...

The 2nd North West Open Meeting takes place next Thursday at the Barton Grange H...

PSPA_CameronW

•12 years ago

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PSP Fact Cards

We are getting a lot of queries about the PSP Fact Cards. If anyone is interested in getting some, please send me an email at...

We are getting a lot of queries about the PSP Fact Cards. If anyone is interest...

PSPA_DebbieB

Partner•12 years ago

34 Replies

Medicine and Me Conference

Monday 22 April 2013 – from 1pm to 6pm Make the most of this chance to learn from one another and leading experts, at this exciting conference where the...

Monday 22 April 2013 – from 1pm to 6pm Make the most of this chance to learn ...

PSPA_DebbieB

Partner•12 years ago

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Dublin Support Group

The Dublin Support Group will take place on Tuesday 6th November 2012 from 12.00 hours to 14.00 hours in Mater Misericordiae University Hospital, Centre for...

The Dublin Support Group will take place on Tuesday 6th November 2012 from 12.00...

PSPA_DebbieB

Partner•12 years ago

1 Reply

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All things PSP Association(142)

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Posts - PSP Association | HealthUnlocked

PSP Association

All things PSP Association posts

Should I consider tracheostomy

Freezing up all over the body

Vaccination

Vaccination

Dad’s 8 year PSP journey at its end

Grief is my middle name

PSP/CBD Symposium - Saturday, June 29, 10am-3pm Pacific (US time)

Orangetrunk

Onset of severe tremor

CBD decline

Diagnosis received yesterday.

PEG Feeding

Phlegm with blood

Progression

Our CBD Journey With Dad

behaviour and PSP

End stages of PSP

recently diagnosed with PSP

Nursing home- what to look for in making a choice?

Preparing for end of life care - what to discuss and where to get help

BBC Article Sept 2021. - https://www.bbc.co.uk/news/uk-england-hampshire-58641372.amp

Article in Karger Medical - Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: A Case Report

Rates of PSP in Maghull, Liverpool

PSP Pain

Coming Soon - New HealthUnlocked

Northamptonshire Local Group Meeting. Saturday 30th March at 2.30

PSPA Regional Open Meeting in Preston - 28th March, 12.30 - 4pm

PSP Fact Cards

Medicine and Me Conference

Dublin Support Group

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive