Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for April 2016

After yesterday's trauma

I've had a cuddle Xxx

I've had a cuddle Xxx

•8 years ago

Thanks to all

I just want to says thanks to all who are on this site. The Peg posting was very good. Like a lot on this site my husband was diagnosed in 2013 and have said...

I just want to says thanks to all who are on this site. The Peg posting was very...

•8 years ago

Happy or sad?

My Dear Mum (not my psp person, that's my husband) has been in hospital for a couple of weeks with acute kidney failure, clung on to life yesterday, we did not...

My Dear Mum (not my psp person, that's my husband) has been in hospital for a co...

•8 years ago

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Sleep

V has had very disturbed nights for the last two or more years often up as many as 15 times a night or at least calling for help for one thing or...

V has had very disturbed nights for the last two or more years often up as ma...

•8 years ago

Electric adjustable beds

Hello My first post on here. My Mum got diagnosed with CBD recently after years of trying to get help and an answer to what was happening to her. She recently...

Hello My first post on here. My Mum got diagnosed with CBD recently after years ...

•8 years ago

Peg

I wanted to ask you all what you think about having a peg fitted, the pros and cons of having one. We have heard so many different stories about having a peg...

I wanted to ask you all what you think about having a peg fitted, the pros and c...

Yvonneandgeorge

•8 years ago

New comer

My husband was diagnosed in 2013 with Fronto-Temporal Dementia, aged 61. He has now had that diagnosis changed to PSP. I have been researching PSP and came...

My husband was diagnosed in 2013 with Fronto-Temporal Dementia, aged 61. He has ...

•8 years ago

Battery Powered Wheelchair

This is one of the things that helps to make life manageable and bearable X

This is one of the things that helps to make life manageable and bearable X

•8 years ago

Info on patients with PSP

Sister with PSP. Would like to speak to people that have a relative with the same syndrome.

Sister with PSP. Would like to speak to people that have a relative with the sam...

•8 years ago

51 Days in hospital

We are home. I crawled in bed with my Aunt Bev the other at the hospital and told her you and I both know you should have never made it through this not in...

We are home. I crawled in bed with my Aunt Bev the other at the hospital and to...

•8 years ago

Interested in Research in Australia

Hi there - I was wondering if anyone in this wonderful community, would have any idea as to whether or not, Australia is doing any research into PSP???? (or...

Hi there - I was wondering if anyone in this wonderful community, would have any...

•8 years ago

Botox

Does anyone have any experience using botox for a stiff jaw. My wife is now having difficulty in opening her mouth to feed and drink. Our Parkinsons nurse is...

Does anyone have any experience using botox for a stiff jaw. My wife is now havi...

•8 years ago

I am famous!!!

Anybody seen the new PSPA photo strip that comes across the top of the screen if you press something(don't know what!!,). Well my ugly mug is on there. The...

Anybody seen the new PSPA photo strip that comes across the top of the screen if...

•8 years ago

Pressure cushion

George has lost so much weight, it is really uncomfortable for him sitting on his chair, he has got a pressure cushion, but not doing any good, can anyone...

George has lost so much weight, it is really uncomfortable for him sitting on hi...

Yvonneandgeorge

•8 years ago

Wants to come home

My mum has been reluctantly in care for 5 months. My dad at 84 has looked after her for about 5 years and could no longer cope. Myself and siblings all work...

My mum has been reluctantly in care for 5 months. My dad at 84 has looked after ...

•8 years ago

Recommended questions for neurologist?

I'm taking my 92 year-old dad to his neurologist today. Last time the neurologist had told me that my dad's flavor of Parkinsonism might be PSP-- I think...

I'm taking my 92 year-old dad to his neurologist today. Last time the neurologis...

•8 years ago

Moving on

The primroses are now stretching their fragile stems for one last glimpse of the sun before being overwhelmed by the fresh verdant grasses which will doom...

The primroses are now stretching their fragile stems for one last glimpse of t...

•8 years ago

Meeting with friends!

Had a lovely afternoon with Shirley, aka nanonthenet, so lovely to chat to such a lovely person and to understand each other so well! Hope to do it on a...

Had a lovely afternoon with Shirley, aka nanonthenet, so lovely to chat to such ...

•8 years ago

Holidays

I know a lot of you still manage holidays all be it in this country(UK) do you take out insurance? I've just lost the cost (all be it not a lot) of a weekend...

I know a lot of you still manage holidays all be it in this country(UK) do you t...

•8 years ago

Falling

My husband is falling on average 4 times in 24 hours, I really struggle to get him up. I have an elk cushion but it's not very easy getting him on it, I've...

My husband is falling on average 4 times in 24 hours, I really struggle to get h...

•8 years ago

Advanced/end of life stage

Hi all, After the sudden deterioration of my mum, her dr phoned me last week to ask my feelings on further investigations or hospital admittance. She has...

Hi all, After the sudden deterioration of my mum, her dr phoned me last week to ...

Julieanne25arobinson

•8 years ago

Reading 'Last Dance At The Savoy'

Someone posted about the above book, interested I bought it last weekend and have to say it is hard to put down. Whilst the help resources etc listed are...

Someone posted about the above book, interested I bought it last weekend and hav...

•8 years ago

Answers

I read the posts, from caregivers and ones who have PSP, my question is who is giving them answers?

I read the posts, from caregivers and ones who have PSP, my question is who is g...

•8 years ago

PLACES IN THE US DOING CLINICAL TRIALS FOR PSP

/www.clinicaltrials.gov/ct2/show/study/NCT02494024?term=psp#contacts THAT IS THE SITE WHICH GIVES YOU STATES, LOCATIONS AND TELEPHONE NUMBERS. SPOKE TO THEM...

/www.clinicaltrials.gov/ct2/show/study/NCT02494024?term=psp#contacts THAT IS THE...

•8 years ago

Where to start?

Hi all, I have been delaying posting on here for a while as posting on her is admitting that PSP is happening and it isn't going away!! My dad was diagnosed...

Hi all, I have been delaying posting on here for a while as posting on her is ad...

•8 years ago

Now at peace from CBD

My husband passed away peacefully on 17th April. He has CBD for around 6yrs he fought his illness every step of the way. His last few months were torture for...

My husband passed away peacefully on 17th April. He has CBD for around 6yrs he f...

•8 years ago

RIP

Last Thursday with the help of a friend and a carer I got Des to his brothers funeral. The journey there and back needed two people to prevent him from...

Last Thursday with the help of a friend and a carer I got Des to his brothers fu...

•8 years ago

JUST FOUND A POST ABOUT PSP HERE IN THE US.

www.clinicaltrials.gov/ct2/show/study/NCT02494024?term=psp#contacts. Sent them 2 emails to see if they are still doing them. They are working with Merck here....

www.clinicaltrials.gov/ct2/show/study/NCT02494024?term=psp#contacts. Sent them 2...

•8 years ago

Eye problems with PSP

Today has been a hard day for my husband. He appeared to stare into space and could not breath. He would not eat anything all day. He told me tonight that his...

Today has been a hard day for my husband. He appeared to stare into space and co...

•8 years ago

Clinical Trial Phase 1 Completed for PSP, Vancouver BC

PSP Friends: FYI--Announced TODAY Alectos Therapeutics Announces FDA Orphan Drug Designation for MK-8719: An Investigational Small-molecule OGA Inhibitor for...

PSP Friends: FYI--Announced TODAY Alectos Therapeutics Announces FDA Orphan Drug...

•8 years ago

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