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Sarah became a member of the PSPA in 2008 when her mum was first diagnosed.

Sarah’s family’s story seems typical; a string of misdiagnoses and several painful years of watching an active, smiley, hard-working and modest lady deteriorate beyond recognition, without any real understanding of what was happening or why. Her mum’s decline in health started as early as Christmas 2003 but typically, in the end, she went quietly, and without a fuss in March 2010.

Living with PSP/ CBD is demanding, frightening and physically exhausting; and all-encompassing. Accessing support can be difficult, time-consuming and overwhelming; taking care of the person living with the illness and those around them equally so.

Sarah runs the local group in Kent; which meet on a bi-monthly basis and together they share stories and support each other over tea and biscuits. She also assists on the evening helpline. Being a volunteer and now a Trustee helps Sarah make sense of what happened to her family but more importantly enables her to not just give something back to the charity but also makes sure that this illness does not get the better of her. A gesture that Sarah’s mum would approve of.

Sarah is here to offer her support to all those living with PSP/ CBD or loving someone that does so please get in touch.