Support services for those living with PSP

For the last seven years I’ve watched my father gradually succumb to the affects of Progressive Supranuclear Palsy (PSP). These past few months have presented a feeling of a race against time as we see dad’s brain function rapidly deteriorate. I don’t live near family so am increasing my visits to see dad and each time I see the cruelty of time as this disease takes hold and works fast.

Often initially misdiagnosed as Parkinson’s, PSP is extremely rare. The disorder results from deterioration of cells in areas of your brain that control body movement, coordination, thinking and other important functions. Unfortunately, there's no cure, so treatment focuses on managing the signs and symptoms, which are likened to a combination of Parkinson’s and Dementia.

Growing up, my dad was a force. Formerly a surfer and pro footballer from Sydney, dad was a true-blue kid of the 60’s - doing everything he could to go for a surf, play some footy or any other sport with his mates. After finishing up his schooling at Marist Hunter’s Hill, he spent many months hitchhiking around the entire coast of Australia with a mate, working some of the most random jobs you could think of (powder monkey being the most unique) and living off beer and sandwiches.

He then made his home in Ingham and has remained ever since. A Sydney boy destined for a country town.

Dad worked hard, and a lot, and built a great career in the sugar cane industry before retiring young so he and mum could travel and see even more of Australia and the world.

The man would light up a room. He’s as charming as he is stubborn and is everyone’s mate. As an adult I know my dad isn’t a tall man, but as a child it always felt like he was the tallest. His personality dwarfed many people.

Sadly, we are onlookers, watching this disease chip away at his personality, his mobility and his voice.

Dad has been through cancer battles three times. He has beaten the odds on every occasion. Unfortunately, this is something he cannot beat.

Dad is still there inside, and the moments of clarity we get are gold - his wit and humour come out when we are least expecting it and but his body and his brain are failing him and it’s like a slow heartbreak.

The thing about PSP is that as hard as it is for the sufferer, it’s almost equally as hard for the carer. Not only for the physical toll, but as the brunt of years of mood changes and verbal aggression from someone whose brain is making decisions that they can’t control. My mum is dad’s full time carer and has navigated this minefield with next to no support.

And this, my friends, is the curse of a disease that is not “famous”. One that impacts a person’s brain function and is harder to understand than a disease that is well-known. There are limited resources to support those in the depths of it.

Fundraising for rare disorder research isn’t uplifting or inspiring, so it’s hard to pull in the big bucks. It’s harder to understand and the impact isn’t easy to see or feel the despair.

Mum recently told me that when dad went through cancer treatment, she felt the support of the world behind her. Everyone was there to help, there were phone calls, words of shared experiences/understanding and a system designed to nurture them both.

She told me with PSP her and dad feel alone.

It was this comment that made me decide to dedicate my June to fundraising for PSP. I have been speaking with Fight Parkinson’s, who are the body that runs a small PSP division and research this disease with little known about it.

I will fundraise for support services for those suffering with, or caring for a person with PSP. There is a bi-monthly zoom peer support group and an ‘Ask an Expert’ session held quarterly. If you donate, your funds will help keep these specific services running.

I’m not running a marathon or climbing a mountain, but I’m going to walk every day for the month of June - rain, hail or shine, with nothing but my brain to entertain me. I’ll leave the devices and the headphones at home and appreciate the fact that my functioning brain can entertain me and move my body.

If you could kindly consider donating and sharing this call out, I would be very grateful.