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

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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 used to run the local group in Kent; which met on a bi-monthly basis and together they shared stories and support over tea and biscuits. She also used to assist on the evening helpline. Sarah was a volunteer who became a Trustee, which helped her to make sense of what happened to her family and enabled her to 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.