Posts - PSP Association | HealthUnlocked

PSP Association

9,728 members•11,604 posts

All posts for April 2022

Anticipatory Grief is REAL

I find myself having days that are incredibly hard —- today is one of those days. I felt that I should share that not every day is filled with JOY for me … I...

I find myself having days that are incredibly hard —- today is one of those days...

•3 years ago

Continuing Healthcare Funding

Hi there, I’m new to the group my Step-Dad was diagnosed with PSP a couple of years ago and his symptoms have worsened since then. Main issues are poor...

Hi there, I’m new to the group my Step-Dad was diagnosed with PSP a couple of ye...

•3 years ago

Registration now open for the Leeds Family and Friends Day

We would like to invite you to our Family and Friends Day in Leeds on Saturday 21 May 2022. This free event will be taking place between 10am and 4pm at...

We would like to invite you to our Family and Friends Day in Leeds on Saturday 2...

Administrator•3 years ago

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PSP best advice = Please Stay Positive

PLEASE STAY POSITIVE = PSP best advice IMPROVING PSP SYMPTOMS – MY PERSONAL JOURNEY Update 14 March 2022. I was diagnosed with ‘PSP’ (Progressive...

PLEASE STAY POSITIVE = PSP best advice IMPROVING PSP SYMPTOMS – MY PERSONAL JOUR...

•3 years ago

The PSP-CBD Ice Cream Challenge 2022

Tee minus 4 days and counting until the PSP-CBD Ice Cream Challenge for the month of May. I created this event 5 years ago to help raise disease awareness,...

Tee minus 4 days and counting until the PSP-CBD Ice Cream Challenge for the mont...

•3 years ago

PSP & CBD Awareness Week, 23 to 29 May

A much-loved awareness campaign is returning soon. Does anyone recognise it?

A much-loved awareness campaign is returning soon. Does anyone recognise it?

Administrator•3 years ago

Eyes not responding

I am a full time carer for a lady with psp who was first diagnosed 2019 I have been her carer for the last year now and notice things are progressing more and...

I am a full time carer for a lady with psp who was first diagnosed 2019 I have b...

•3 years ago

Sudden loss of ability to move?

Hello all, I haven't been posting much. But I'd appreciate your advice. On Friday, my husband was going about his day, had driven to the grocery pickup, got...

Hello all, I haven't been posting much. But I'd appreciate your advice. On Fri...

LostinHeadSpace

•3 years ago

Caregivers - what do you do to nurture yourselves?

Coming out of a long cold springtime here and just in time!!! The green grass and blue skies are so welcome. Fatigue was bad this winter, and for a while there...

Coming out of a long cold springtime here and just in time!!! The green grass an...

•3 years ago

Cravings for sugar in late stage PSP

Hello all. My husband has been wanting extra sugar for a few months. More syrup on pancakes, more honey in his tea, more Reese's P cups, and in his oatmeal. It...

Hello all. My husband has been wanting extra sugar for a few months. More syrup ...

•3 years ago

Reality Check

It’s Monday … I choose JOY. I wanted to share something - Someone sent me a private message on here yesterday, and the message basically asked how I can...

It’s Monday … I choose JOY. I wanted to share something - Someone sent me a p...

•3 years ago

Reality Check

It’s Monday … I choose JOY. I wanted to share something - Someone sent me a private message on here yesterday, and the message basically asked how I can...

It’s Monday … I choose JOY. I wanted to share something - Someone sent me a p...

•3 years ago

Easter

Happy Easter everyone

Happy Easter everyone

•3 years ago

Easter JOY … a true gift

By far, my most favorite Easter morning in a very long time! The joy she expressed is overwhelming to this girls heart —- she opened her eyes to a packed...

By far, my most favorite Easter morning in a very long time! The joy she expres...

•3 years ago

In bed all day

Hi, Rick has stayed in bed all day. It was just so out of his normal. I called the hospice nurse to come out and check him. She said it could be just a off day...

Hi, Rick has stayed in bed all day. It was just so out of his normal. I called t...

•3 years ago

CBD

Hope you are all keeping well. I haven’t been on here for a while. To be honest I have been suffering with dreadful fatigue and struggle to do the simplest...

Hope you are all keeping well. I haven’t been on here for a while. To be honest...

•3 years ago

Is chronic itching for no reason related to PSP or CBD?

My husband always itches, mostly on his back but sometimes everywhere. There appears to be no reason for it, no marks such as rash or bumps. Moisturizers and...

My husband always itches, mostly on his back but sometimes everywhere. There app...

•3 years ago

Gentle Hands

This is by far the most favorite activity I have done with my sweet Momma! Casting of our clasped hands — a forever embrace. If you’re able, I would highly...

This is by far the most favorite activity I have done with my sweet Momma! Casti...

•3 years ago

Is extreme body heat part of having CBD?

Hello Everyone! My husband suffers from CBD and is uncomfortably hot all the time. His skin can be cold to the touch. It's as if his brain doesn't receive...

Hello Everyone! My husband suffers from CBD and is uncomfortably hot all the ti...

•3 years ago

Help Ulster University research access to rehab services

If you have PSP or CBD and are living in Northern Ireland could you help researchers at Ulster University learn more about access to rehabilitation services...

If you have PSP or CBD and are living in Northern Ireland could you help researc...

Administrator•3 years ago

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Thank you to everyone here

My dad died on Sunday from this awful disease. He was stoic throughout, from diagnosis until death, never once complaining and I'm so proud of him. Despite...

My dad died on Sunday from this awful disease. He was stoic throughout, from di...

•3 years ago

The latest edition of PSPA Matters is now available!

The latest edition of PSPA Matters is now available for you to download to read or listen to. As usual, the magazine is packed full of informative articles,...

The latest edition of PSPA Matters is now available for you to download to read ...

Administrator•3 years ago

Hi everyone, I'm new here.

I was diagnosed with PSP in the summer of 2020 and have been having stiffness in my legs and sometimes they even give out and want to 'buckle.' This comes...

I was diagnosed with PSP in the summer of 2020 and have been having stiffness in...

•3 years ago

What things have you changed or modified in life to get through it all more simply or easily?

I’ve stopped fighting difficult things to help get through all this as the patient (F65 living alone). I find workarounds or sometimes find a completely...

I’ve stopped fighting difficult things to help get through all this as the patie...

•3 years ago

Black Pepper essential oil may help with dysfagia

Dear all, since my mother, affected with PSP, has died last March, I have found heart-wrenching coming here and read about the experiences of everyone affected...

Dear all, since my mother, affected with PSP, has died last March, I have found ...

•3 years ago

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