Michelle first began exhibiting symptoms of PSP in 2021—dragging her left foot and loss of balance. After suffering two bad falls in which she broke both of her shoulders—the right shoulder in 2022, then the left in 2023—Michelle strongly advocated for herself and her wellbeing, telling her GP, “I’m a danger to myself, I need to see another neurologist.”
Michelle met with three different neurologists before finding her current neurologist with a Movement Disorders background at St Vincent’s. This led to Michelle’s official diagnosis in 2024, when she was only 57 years old.
Though ‘devastated’, Michelle and Mark agreed that they were also glad to finally have a diagnosis.
“Even though it was obviously a devastating diagnosis, it was actually good in some ways because we’d had three years of no diagnosis and at least now we had something that we could sort of attack and fight and research,” said Mark.
Michelle recalled receiving very little information upon her diagnosis, but after some ‘Googling’, discovered that Fight Parkinson’s is Australia’s leading organisation offering support for people with Parkinson’s (including Young-Onset) and Atypical Parkinson’s (including PSP, MSA, and CBS).
“I got on to Fight Parkinson’s and found I had more true information,” said Michelle.
It’s through Fight Parkinson’s that she joined an Atypical Parkinson’s peer support group that helps her feel “put back together again.”
Inspired by her attendance at a small zine fest, and encouraged by her artistic friend, Louisa, Michelle utilised her scrapbooking and journaling skills to create her own zine—a small version of a magazine, usually self-produced for a relatively small audience.
Michelle’s first zine, titled, ‘There is nothing TYPICAL about ATYPICAL PARKINSON’S’, was created primarily with a goal to be able to give it to friends and family to explain her diagnosis.
“It was a struggle finding PSP information that was personal and realistic, not so ‘doom and gloom’ or the generic stuff you can find on Google,” said Mark.
Following her PSP-specific diagnosis, Michelle went on to publish her second zine, titled, ‘There is nothing SUPER about PROGRESSIVE SUPRANUCLEAR PALSY’. Michelle gives both of her zines out to any new people she meets now. Even her neurologist and other members of her health team have asked for copies.
Married for 38 years, Mark is now Michelle’s husband, as well as carer. However, the couple choose to focus more on the former, especially with four very supportive kids and their dog, Scooby—her beautiful family whom Michelle firmly believes are vital to have in her life.
Although daily physiotherapy has become a new addition to Michelle’s life since her diagnosis, Mark believes that focusing on attitude, patience, and routine are key to helping keep their life together “as unchanged as possible”.
“I think it’s important to not be so focused on the PSP, and just continue to do what you do… We still go up to the coffee shop and out on holidays,” he said.
And although Michelle’s balance, ability to walk, and eyesight have been affected, her and Mark both agreed that people living with PSP should not be afraid to ask for help, especially when travelling.
After sharing that she required her walker during their holiday in Port Douglas, Mark and Michelle strongly recommended to “get rid of the pride and let people help you.”
“We found that people were really, really helpful, whether it was on the flights, at the resort, nothing was too hard for them… I know it sounds horrible but take advantage of people’s willingness to help. Because most people actually want to,” said Mark.
Fight Parkinson’s would like to thank Michelle and Mark for sharing their personal story with our community during PSP Awareness Month. We hope that it allows others to find comfort, hope, or reassurance in the understanding that they are not alone in their health journey with Progressive Supranuclear Palsy.
If you would like to share your own experiences as someone who lives with, or cares for someone who lives with Parkinson’s (including Young-Onset) or Atypical Parkinson’s (including PSP, MSA, or CBS), please click here to express your interest.
