"The Helpline's compassion, experience, an... - PSP Association

PSP Association

9,729 members11,604 posts

"The Helpline's compassion, experience, and understanding of PSP were very comforting and extremely helpful."

HelenPSPA profile image
HelenPSPAAdministratorPSPA
1 Reply

"I signed up as a Helpline Volunteer as the Helpline made a big difference for the better when our family was going through the PSP journey.

My wonderful mother was diagnosed with PSP in 2015 and very sadly died from the disease in 2018. The Helpline was a support to her and my father at the very beginning and the first people we spoke to who actually had real-life experience of PSP. They listened and signposted. They gave my sister and me the confidence to trust our instinct and in such tricky circumstances make significant changes for the better.

It is very difficult to know what to do for the best when you are grieving and watching the person you love the most in the world go downhill, trying to manage day-to-day practical nightmares, juggle all sorts of appointments, update worried friends and family. Speaking to the Helpline helped our family see a path through and prioritise what was important to us all. Their compassion, experience, and understanding of PSP were very comforting and extremely helpful."

If you would like to speak to someone, whether you need a listening ear, information or to find out more about PSPA Suppor Grants, we are here for you.

Please contact our Evening Helpline on 0300 0110 122 or by emailing helpline@pspassociation.org.uk, Monday to Friday, 7pm to 9pm.

Written by
HelenPSPA profile image
HelenPSPA
Administrator
To view profiles and participate in discussions please or .
1 Reply
Jellybenz profile image
Jellybenz

Well done Helen. The more people available to help the newly diagnosed and the further along the line, the better. As even most medical staff have no idea what PSP is. And no clue how to advise ect. I have found this site so helpful and its comforting to know I have somewhere to go for help. Best wishes x x

Not what you're looking for?

You may also like...

Ever hear of the PSP "road"?

I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found...

The end of PSP journey

On Tuesday October 29th my mother passed away and PSP journey has ended. The journey of watching...
Blueclouds07 profile image

Sponsored Warrior Run for the PSP Association - Lots of mud and obstacles!

I hope its okay to post this. I am taking part in a 6km mud run for the PSP Association on 30th...
coyle51 profile image

My grandad <3 died at the hands of psp 11.4.13

hey im toni im 20 years old and my grandad had psp, he lived with it for 11 years he was the...
sutters2013 profile image

Moved on

Hi all the time has come for my residents transition to a nursing home. A bed had become available...
Bridgewater profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.