Jenny Allen was diagnosed with PSP in 2011. The support from PSPA‘s helpline and local group inspired Jenny to leave a legacy to PSPA to continue its vital work. Her daughter, Katie, tells her story…
“We often felt we were one step behind Mum’s PSP. The hardest thing was that at each stage, we knew there was worse to come. It was grappling with these different and increasingly challenging phases that made us all appreciate PSPA. Fairly early on into her diagnosis, Mum wanted to leave a legacy to PSPA.
“Mum leaned heavily on the support that PSPA offered, both via the helpline and the Family and Friends days where all of us could meet other people affected by the condition. That helped her and us come to terms with it, as well as some of the practical aspects like advice on adapting her house, on setting up care and on what to expect as the condition progressed. She used to feel anxious about what having PSP meant for my brother Nick and for me, so the helpline was a big reassurance. She knew we could ring up when we needed advice and support and that we weren’t alone.
“Mum’s legacy is not huge but she wanted to give something back to the people who supported her. She always had the longer game in mind – finding a cure, while also realising how the helpline is vital in the here and now when you need practical or emotional support with that personal touch.
“Mum was never bitter, she smiled and kept laughing for as long as she could and she faced PSP as pragmatically as with every other sadness and challenge in her life. Leaving money in her will to PSPA was, for Mum, an obvious way to help others dealing with this ‘brute of a disease’.”