Posts - PSP Association | HealthUnlocked

PSP Association

9,625 members•11,552 posts

All posts for July 2021

Not knowing how to stand.

Good morning everyone hope y’all are safe and well. So I’ve been having to tell my husband how to stand. When I transfer him from wheelchair to bed or vice...

Good morning everyone hope y’all are safe and well. So I’ve been having to tell...

Hidden

•3 years ago

10 Replies

Just found out

Thank you all for this very special association. I am is OZ in the country and have just been diagnosed. Feel like a rabbit with a car light stunning me. Or...

Thank you all for this very special association. I am is OZ in the country and ...

Daruka

•3 years ago

23 Replies

Our Journey is over

Our journey is over for my dad with PSP. He left us on 5th July. He was a man who never felt sick in his life. A person who would never start his day without...

Our journey is over for my dad with PSP. He left us on 5th July. He was a man wh...

Monapapa

•3 years ago

17 Replies

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Crystals & Mucus in Urine with Frequent Chills

My mum suffers from PSP. She's been experiencing frequent chills and discomfort for the last few days. We noticed dark brown urine in the urobag and the...

My mum suffers from PSP. She's been experiencing frequent chills and discomfort ...

pankaj911

•3 years ago

11 Replies

Some Helpful Information

https://www.facebook.com/allstripesresearch/posts/2933674800240035 Tim

daddyt

•3 years ago

1 Reply

Last chance to nominate for the PSPA 10,000 Voices Awards

Help shine a light on the achievements of people who make a difference in the PSP & CBD community by nominating them for our 10,000 Voices Awards! We have ten...

Help shine a light on the achievements of people who make a difference in the PS...

HelenPSPA

Administrator•3 years ago

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A little overwhelming

Good morning everyone. My Dad was diagnosed with PSP a little over 3 months ago, after we went through over two years of various tests and hospital admissions...

Good morning everyone. My Dad was diagnosed with PSP a little over 3 months ago,...

Nicnic7

•3 years ago

21 Replies

Our battle is finaly over.

Just to update you all Tony passed away on July 2nd. A short but rapid decline over 2 years. He is now at peace and not frustrated anymore. And I was grateful...

Just to update you all Tony passed away on July 2nd. A short but rapid decline o...

Jellybenz

•3 years ago

25 Replies

Botox, Incontinence, Update

Good morning all, I've been reading some of the posts that come up, but haven't had time to sit down and reply at all. I hope everyone is doing ok. Mom is...

Good morning all, I've been reading some of the posts that come up, but haven't ...

ARutzen

•3 years ago

6 Replies

New(ish) diagnosis.... what helps?

My wife (79) was diagnosed with PSP last April, and seems to be getting weaker by the day. Due to see neurologist again in a couple of weeks time. Before that,...

My wife (79) was diagnosed with PSP last April, and seems to be getting weaker b...

Epsilon12

•3 years ago

10 Replies

Neurological Alliance Scotland Survey

The Neurological Alliance Scotland is currently gaining an insight into peoples' experience of virtual appointments (telephone and video) so they can feedback...

The Neurological Alliance Scotland is currently gaining an insight into peoples'...

HelenPSPA

Administrator•3 years ago

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Has anyone used a water flosser to clean teeth?

What is a good way to help my husband keep his teeth clean? Our dentist suggested a water-flosser and I looked into them and I was surprised to see there are...

What is a good way to help my husband keep his teeth clean? Our dentist suggeste...

Runner333

•3 years ago

12 Replies

REFINING MY PREVIOUS QUESTION (,,, food for thought): should it be preferable in PSP to take phenylalanine instead of tyrosin supplements?

REFINING MY QUESTION (,,, food for thought...) Tyrosine is a dopamine percursor and as such appears to be a good option for supplementation in PSP. “Tyrosine...

REFINING MY QUESTION (,,, food for thought...) Tyrosine is a dopamine percursor ...

BluesHealer

•3 years ago

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Protein PERK

Hi to everybody, did anyone heard about hyperactivation of the Unfolded Protein Response (PERK )or UPR. and this medications Trazodone e il DBM. Love Anna

Hi to everybody, did anyone heard about hyperactivation of the Unfolded Protein ...

kjschy

•3 years ago

9 Replies

Study in dynamic networks in PSP

Earlier this week, findings from a study in dynamic networks in PSP were published in the Science Direct Journal. The paper’s lead writer, Dr David Whiteside,...

Earlier this week, findings from a study in dynamic networks in PSP were publish...

HelenPSPA

Administrator•3 years ago

1 Reply

Eyes closing after medication

Hi, it is 18 months since my wife's first visit to a neurologist, initially they suspected Parkinson's or Parkinson's plus; PSP was mentioned quite early on...

Hi, it is 18 months since my wife's first visit to a neurologist, initially they...

Zerachiel

•3 years ago

4 Replies

Restlessness and falls

Restlessness My partner has PSP and becomes very restless several times a day. I have to be with him or else he can slip off the chair. Is this normal for...

Restlessness My partner has PSP and becomes very restless several times a day. ...

maggiegordon

•3 years ago

15 Replies

Helpline hours extended

For a six-month period, we will be extending our Helpline hours from 9am to 9pm, Monday to Friday, to enable more families to access support and information....

For a six-month period, we will be extending our Helpline hours from 9am to 9pm,...

HelenPSPA

Administrator•3 years ago

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Incontinence Suggestions

There are a few things you could inquire about to help you both get better sleep: As my mom’s PSP progressed and she could no longer use the commode...

There are a few things you could inquire about to help you both get better sleep...

mb2roger

•3 years ago

1 Reply

My husband Don has passed away

Don passed away 7/14/2021. This disease is awful. He was only 68 and a shell of himself. It is devastating that he is gone but I know he is not suffering and...

Don passed away 7/14/2021. This disease is awful. He was only 68 and a shell of ...

Y2U4

•3 years ago

34 Replies

We are getting near the incontinence stage

My lovely wife is terrified of, but getting indications of, incontinence. So far one or two 'accidents' but an increased demand on me to get her to the...

My lovely wife is terrified of, but getting indications of, incontinence. So fa...

Scottoppy

•3 years ago

18 Replies

Hallucinations

Hello Everyone, Just wondered if anyone else’s loved one suffer from Hallucinations as part of their PSP symptoms? My father in law has been having them for...

Hello Everyone, Just wondered if anyone else’s loved one suffer from Hallucinati...

Blue_Maria

•3 years ago

7 Replies

Making decisions

Hello to all! We have found out that my loved one is past the stage of being able to have a PEG tube put in. We have spoken of making this decision almost a...

Hello to all! We have found out that my loved one is past the stage of being abl...

Stephanielayell82

•3 years ago

10 Replies

Dad moving out and into care

Hi, I'm new here. In the last 24 hours I've read so many stories and wish I'd found it sooner as there are so many things I can relate to! I do want to share...

Hi, I'm new here. In the last 24 hours I've read so many stories and wish I'd fo...

Nodbod

•3 years ago

12 Replies

New PSPA Podcast episode now available

Our third PSPA Podcast episode is now available to listen to! In this episode, we speak to Denise Hunt and Navin Sweak about their families' experiences of...

Our third PSPA Podcast episode is now available to listen to! In this episode, w...

HelenPSPA

Administrator•3 years ago

Be the first to reply

PSP: Diagnosis and Management paper in BMJ Journal

“We wrote the paper so that future diagnosis of PSP is made sooner, and with greater certainty, than is currently the case for many people. The right diagnosis...

“We wrote the paper so that future diagnosis of PSP is made sooner, and with gre...

HelenPSPA

Administrator•3 years ago

7 Replies

Bed

So it’s me again, my husband has started going to bed at 4-430 pm. Is it because he is tired or bored?

So it’s me again, my husband has started going to bed at 4-430 pm. Is it because...

Hidden

•3 years ago

5 Replies

Goodbye

I have not written on here before but my mum finally succumbed to this awful disease and passed away a few days ago. Terribly sad but such a relief she is no...

I have not written on here before but my mum finally succumbed to this awful dis...

JAT17

•3 years ago

9 Replies

What to expect from your care guide

Not sure what to expect from your care? Our handy pocket guide can help. We have guides for PSP & CBD to help open discussions with health and social care...

Not sure what to expect from your care? Our handy pocket guide can help. We have...

HelenPSPA

Administrator•3 years ago

3 Replies

PSP

My wife Pat DEAN passed away last night after ten years of difficulties. Your comments and advise was very helpful over the years. I wish you all the best in...

My wife Pat DEAN passed away last night after ten years of difficulties. Your co...

Hidden

•3 years ago

22 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for July 2021

Not knowing how to stand.

Just found out

Our Journey is over

Crystals & Mucus in Urine with Frequent Chills

Some Helpful Information

Last chance to nominate for the PSPA 10,000 Voices Awards

A little overwhelming

Our battle is finaly over.

Botox, Incontinence, Update

New(ish) diagnosis.... what helps?

Neurological Alliance Scotland Survey

Has anyone used a water flosser to clean teeth?

REFINING MY PREVIOUS QUESTION (,,, food for thought): should it be preferable in PSP to take phenylalanine instead of tyrosin supplements?

Protein PERK

Study in dynamic networks in PSP

Eyes closing after medication

Restlessness and falls

Helpline hours extended

Incontinence Suggestions

My husband Don has passed away

We are getting near the incontinence stage

Hallucinations

Making decisions

Dad moving out and into care

New PSPA Podcast episode now available

PSP: Diagnosis and Management paper in BMJ Journal

Bed

Goodbye

What to expect from your care guide

PSP

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive