Phil Orchard’s story of life with Parkinson’s and hope for the future
People I meet who know I have Parkinson’s tend to think I don’t look too bad for my age, and often think ‘there’s not much wrong with him’. Their instant judgement on seeing me for the first time is superficially true, but it’s not quite like that on the other side.
The casual observer doesn’t see the bit that has me thrashing about in bed at night because my legs won’t settle down. Or when my wife, Isabel, has to wake me because I’m having a nightmare and shouting at the top of my voice. The mix of Parkinson’s drugs that keeps me stable for reasonable periods has these unwanted side effects.
Similarly, they don’t see my morning struggle to get out of bed and Isabel trying to dress me because my limbs won’t react. They don’t see me shuffling around the house until the first day’s drugs kick in and I can make a reasonable attempt at shirt buttons and shoelaces.
Isabel often says, ‘It’s like waking up with an old man who gets younger through the course of the day’. Unfortunately, it doesn’t last, and she goes to bed with the same old man she dressed in the morning.
I also have dyskinesia. It doesn’t show so much when I’m standing up, but when I’m sitting down, my legs are constantly moving. When I get freezing of my gait in a shopping centre and people stop and stare, thinking I’m drunk, I simply tell them why.
I could go on, but the truth is Parkinson’s is an insidious and destructive condition that saps my energy, independence and freedom of movement.
Throughout my time with Parkinson’s I have cycled, played tennis and golf and in late 2021, learnt to box through an exceptional exercise research program put together by the Perron Institute and Edith Cowan University with the help of professional fitness trainer Rai Fazio, a former Golden Gloves champion.
The Fight-PD high intensity, non-contact boxing has improved my upper body strength, flexibility, balance and cognitive skills.
I have nothing but praise for those who devised, planned and executed this program. It has undoubtedly slowed the progress of my Parkinson’s.
Parkinson’s doesn’t take away your life, but it takes away some of the pleasures of living.
Fighting the battle day in day out, week in week out and year in year out does get tiring.
I’m sure researchers and scientists will come up with a cure for Parkinson’s – maybe not in my time, but maybe in my grandchildren’s time.
However, research costs money, and without institutions like the Perron Institute and its teams of researchers, we would be back in the Dark Ages.
As long as we have people dedicated to finding a cure, people like me can live in hope.
Philip Orchard AM AFNI CMDR RAN (Ret’d) has lived with Parkinson’s for 15 years. He is a former Commander Officer of HMAS STIRLING, the Royal Australian Navy’s largest operational establishment, and after retiring from a naval career spanning 34 years, he served for five years as the Head of the British Consulate in WA and five years as CEO of RSLWA before retiring due to his Parkinson’s. He is currently the Chair of RSLWAs Trustees and a Director of Brain Waves, a not-for-profit organisation working with the Perron Institute to raise money for research. In May 2023 he was instrumental in raising money and profile for the Indian Ocean Row 23.
He is a recipient of the Member of Australia (AM) and was awarded the National Australia Day Council Medallion for 2020 for his services to veterans and their families.
In late 2021, he learnt to box via the Fight-PD research program at ECU developed by the Perron Institute’s Medical Director Professor David Blacker AM and golden gloves boxing champion Rai Fazio.
In 2023, he also took part in a Perron Institute TV ad about our Parkinson’s research. Watch it here.
Photo caption: Isabel and Phil Orchard outside the Perron Institute for the TV ad filming.