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Helpline Volunteer – Matilda Taylor

I volunteer because the Helpline made a big difference when our family were going through our PSP journey.


Matilda joined our team of Helpline Volunteers after her family received support from PSPA. Here she shares a little about her role.


Matilda said:

“My wonderful mother was diagnosed with PSP in 2015 and very sadly died from the disease in 2018.

PSPA’s Helpline were 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 I 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.

That’s why I signed up to volunteer, because it was the Helpline that made a big difference for the better when our family were going through the PSP journey.”