Tasmania has an opportunity to contribute to a global research initiative into a condition that "erodes a little bit of your person".
Out of six boys, both Wings for Parkinson's advocate Harley Stanton and his older brother were diagnosed with Parkinson's.
He said he believed they were affected by chemicals related to the apple orchard they grew up on.
Dr Stanton was diagnosed in 2019, after his brother had already passed away.
His doctor referred him to a neurologist after noticing he had lost significant facial expression.
"I used to be smiling a lot ... I became very much more serious," he said.
"Now when I smile, I really have to accentuate it."
The 83-year-old said the condition didn't impact people's life expectancy, so much as their quality of life.
"I don't enjoy sitting here and having my hands shake," he said.
"I try to hide it as much as I can in public, but you can't run away from it. You got to learn to live with it."
He takes medication four times daily, and does vigorous exercise four or five times a week to help stave off worsening symptoms.
"The unfortunate part about it is it's pretty progressive. The only thing that's keeping me going these days is to go to the gym."
Parkinson's Australia reports Parkinson's is the fastest-growing neurological condition in the world, and incidence rates increase by four per cent annually in Australia.
They report that over 2000 Tasmanians are living with Parkinson's.
Parkinson's symptoms are caused when part of the brain dies off and dopamine production is reduced.
There is no conclusive cause for Parkinson's, why some people are affected and others are not, or why symptoms vary so much from person to person.
Parkinson's Australia reports a combination of head trauma, family history, pharmaceutical or environmental toxins like pesticides can trigger Parkinson's.
A Tasmanian-first study
When he was first diagnosed, Dr Stanton said he withdrew into himself, and many people he'd spoken to avoided letting people in their lives know about the diagnosis.
"I felt like many people do and I went into my shell," he said.
"It sort of erodes a little bit of your person that you are, you know, erodes your personality a little bit."
Dr Stanton said he wanted to reduce the shame, stereotypes and stigmas associated with a Parkinson's diagnosis, encouraging people to share their stories.
"The people who share their stories do much better in the long term than those who don't," Dr Stanton said.
"It's really good to encourage people to come out of the woodwork and become part of research."
Dr Stanton is drumming up awareness for Tasmania's first genetic study, and the first time the Michael J Fox Foundation has funded research in the state.
The study includes a blood donation from people with the condition, and a questionnaire.
The foundation has provided $230,000 for the study of genetic impacts of Parkinson's.
He said the research was both an opportunity to contribute to the Global Parkinson's Genetics Program, alongside 250,000 other people, and to build the Tasmanian Parkinson's community.
The program hopes to support the development of better treatments, and ultimately, a cure.
UTAS researcher Samantha Bramich said about 200 Tasmanians have donated in Hobart across June, July and August.
Collections will take place in Burnie's Field Building on August 27 and 28, and at Launceston's The Shed on September 2 to 5.
She said they wanted to make sure the data collected was representative of the whole state.
"We're really focused on getting as many people with Parkinson's in the north and northwest involved in the genetic research because we want to have a statewide impact," she said.