Posts - PSP Association | HealthUnlocked

PSP Association

9,626 members•11,552 posts

All posts for March 2020

Sense of humor

So few will get this, so I don’t share publicly ... but with you, I know I can. This is what we do in quarantine —- lose our minds! Mom took a little tumble...

So few will get this, so I don’t share publicly ... but with you, I know I can. ...

•5 years ago

Study to help improve care for people with PSP & CBD

"As we process the information, we will increase our knowledge and evidence base in PSP & CBD which in turn, we hope, will lead to improvements in diagnosis...

"As we process the information, we will increase our knowledge and evidence base...

Administrator•5 years ago

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Orpan Drug Retrotope's RT001

US FDA Grants Orphan Drug Designation for Retrotope's RT001 is treatment for PSP. Does this mean it is available for patients? How do you get it? How much does...

US FDA Grants Orphan Drug Designation for Retrotope's RT001 is treatment for PSP...

•5 years ago

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So tired ...

Just curious ... Mom has been extremely tired, sleeping more and more during the day. On average she is up around 7:30 am, napping around 1pm - 4pm...

Just curious ... Mom has been extremely tired, sleeping more and more during the...

•5 years ago

So much for my plan

Liz's home now has a number of residents who are showing flu like symptoms. Visitors are no longer allowed. She is less than a mile away. I can feel her...

Liz's home now has a number of residents who are showing flu like symptoms. Visi...

•5 years ago

Heaven knocked on our door - she answered

I remember when I first joined this forum as patient a few years years ago, I distinctly remember some of the veterans warning me that I might become unnerved...

I remember when I first joined this forum as patient a few years years ago, I di...

•5 years ago

Low oxygen levels

I’m freaking out right now because our caregiver’s morning routine shows Mike has low oxygen levels. He’s definitely not ‘with it’ - the vase nurse is bringing...

I’m freaking out right now because our caregiver’s morning routine shows Mike ha...

•5 years ago

-Retrotope-s-RT001-in-the-Treatment-of-Progressive-SupraNuclear-Palsy-

https://www.globenewswire.com/news-release/2020/02/18/1986602/0/en/US-FDA-Grants-Orphan-Drug-Designation-for-Retrotope-s-RT001-in-the-Treatment-of-Progressive-S

https://www.globenewswire.com/news-release/2020/02/18/1986602/0/en/US-FDA-Grants...

•5 years ago

Helpline volunteers needed

Due to a change in available volunteers, our evening Helpline hours will be reducing. From 1 April our Helpline will only be available from 7pm to 9pm on...

Due to a change in available volunteers, our evening Helpline hours will be redu...

Administrator•5 years ago

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I am so tired...

It has been quite awhile since I've posted anything. Caring for someone with PSP has a way of swallowing you up. John has declined tremendously and we have...

It has been quite awhile since I've posted anything. Caring for someone with PSP...

•5 years ago

PSP

Just wondering is there a lot of diagnosed PSP in the UK I know they have hot spots in different countries. I am from the US, my brother is going on 10 years...

Just wondering is there a lot of diagnosed PSP in the UK I know they have hot sp...

•5 years ago

Contentment

I like being outdoors, doesn't really matter what I am doing or even the weather. I hike, camp, mountain bike, fish, hunt, stargaze, snow ski, scuba dive,...

I like being outdoors, doesn't really matter what I am doing or even the weather...

•5 years ago

Joy and Contentment-Following

There are so many things-my darling husband, my wonderful children and grandchildren, flowers. But, I have been a knitter and crocheter for years and while I...

There are so many things-my darling husband, my wonderful children and grandchil...

•5 years ago

A Professionals Guide to CBD

Our 'A Professionals Guide to CBD' booklet provides an overview of standards of care and best practice for health and social care professionals. As well as...

Our 'A Professionals Guide to CBD' booklet provides an overview of standards of ...

Administrator•5 years ago

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Crochet for calmness - following Kevin's idea

I started crocheting about 18 months ago, thinking it was something to do whilst sitting with Mum. Never did much sitting, as always something to do but found...

I started crocheting about 18 months ago, thinking it was something to do whilst...

•5 years ago

Pain of isolation

Hi All The nursing home my mum is in gas closed its doors to all but essential (end of life) visitors. This is really tough 😢 Of course I understand the...

Hi All The nursing home my mum is in gas closed its doors to all but essential (...

•5 years ago

Unexpected laughing session

Momma is pretty quiet these days, but I’ve discovered that watching America’s Funniest Videos is a beautiful way to hear her laughter and watch perfect joy on...

Momma is pretty quiet these days, but I’ve discovered that watching America’s Fu...

•5 years ago

Knitting - following Kevin

I love Kevin’s idea! I picked up knitting to abate my anxiety about mom’s condition about 7 years ago (when we still didn’t know fully what was going on). In...

I love Kevin’s idea! I picked up knitting to abate my anxiety about mom’s condit...

•5 years ago

Running is really helping me to deal with my grief

Following on from Kevin’s post - running makes me happy and leaves me feeling good and helps me to be more positive. In particular it has helped me to deal...

Following on from Kevin’s post - running makes me happy and leaves me feeling go...

•5 years ago

What gives you joy or contentment?

Hello folks. There are four positive emotions and it's important to try and experience them as often as we can. Our physical health and wellbeing depend on...

Hello folks. There are four positive emotions and it's important to try and exp...

•5 years ago

Naughty ice cubes!

Hubby says “nothing is ever easy”. I’m not laughing at his expense, but I’m laughing along with him. He thought it was funny too! I’m proud that he found the...

Hubby says “nothing is ever easy”. I’m not laughing at his expense, but I’m laug...

•5 years ago

Great Send Off

Last night was the Celebration of Life for my husband George, who passed away in January with CBD. All of my siblings (3 sisters and a brother) had flown in...

Last night was the Celebration of Life for my husband George, who passed away in...

•5 years ago

Pretty babies

•5 years ago

Self isolation

Hi Folks I have gone into self isolation. I am not ill and cannot afford to be so. My nightmare is that Liz closes her days with me infected with this virus...

Hi Folks I have gone into self isolation. I am not ill and cannot afford to be s...

•5 years ago

More spring.

This from a short while ago. Everything is so early. These are blood roots. They flower very early in spring.

This from a short while ago. Everything is so early. These are blood roots. They...

•5 years ago

Down to a Whisper

So the past couple of weeks have delivered some change in Moms ability to have volume in her voice; we are down to a whisper. I have had her reading books...

So the past couple of weeks have delivered some change in Moms ability to have v...

•5 years ago

More Outdoors

The snow is still deep. I didn't hit the ground with pole I stuck into the snow, snow packed under the pole basket too hard. Ron

The snow is still deep. I didn't hit the ground with pole I stuck into the snow...

•5 years ago

I’m a Warrior!

This has been an uphill journey, and we face each day with the spirit of a warrior! This is Mom secured in her “stand assist unit” ... I just bought a second...

This has been an uphill journey, and we face each day with the spirit of a warri...

•5 years ago

Botox for alien hand

Has anyone ever tried botox for alien hand..my mums hand is now a claw and very painful to try to even touch her hand to wash it

Has anyone ever tried botox for alien hand..my mums hand is now a claw and very ...

•5 years ago

PSP listening to stories on audio player

My wife is in the later stages of PSP.I am looking into Talking books which is a cd and operates with a CD player.Has anyone any experience off this and did...

My wife is in the later stages of PSP.I am looking into Talking books which is a...

•5 years ago

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