UNDERSTOOD – What does it mean to you?

My beloved mother, Pauline, passed away due to PSP a couple of weeks ago. Her initial symptoms – unexplained falls, often backwards, were investigated as heart related for 2 – 3 years before she was sent to a neurologist who literally took one look at her and gave a probable diagnosis. The falls backwards were a huge red flag as was an involuntary facial expression of surprise and a soft voice. When I read up about PSP after mum’s diagnosis I was shocked at how textbook her symptoms were – why hadn’t anyone spotted it before?

In some ways mum was lucky as the Parkinson’s medication had some positive effect initially, but they can never fully manage PSP which is relentless.

I watched from a distance as my mum stopped being able to tend her garden, cook, write legibly, knit/spin/embroider. Then I moved back home from overseas to help my then 86 year-old dad care for mum.

For the last 2 years I’ve had a front row seat to her loosing the ability to read, cut up her food, eat what she liked, hold cutlery, wash or dress herself, feed the birds at the park, sit upright in a chair, speak, smile and finally swallow anything. Such a kind and generous woman robbed not only of her independence, but of the ability to do everything that gave her joy. You wouldn’t wish this disease on an enemy; to see it consume a loved one is beyond words.

Mum took part in the PROSPECTS study and donated her brain and other related tissues to the Queen Square Brain Bank. It was her only way to stand up to this vile disease. Ensuring her donation can be of benefit to future sufferers and their families is why I support this appeal.