"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.
The story of PSP and Tom
The roller coaster of PSP
What are the four stages of PSP.
Some things I used to do in the latter stages of PSP
