Canberra woman Jen Harkness is among the estimated 20 per cent of people living with Parkinson's disease who are of working age.
A major seminar to help people with Parkinson's live their best life will be held at the Southern Cross Club in Phillip on Thursday, November 29, with international experts speaking. Tickets are available at parkinsonsactseminar.eventbrite.com.au. Bookings must be made by Saturday, November 24.
Jen, 53, was 48 when she was diagnosed with the degenerative neurological condition.
"What led me to this point was that of denial and ignoring a combined group of symptoms. Choosing to deal with them separately," she says.
"I noticed my sense of smell had diminished at about 44, and was almost non-existent by 48. I started getting treatment for a stiff shoulder and it just wasn't improving. This led to a twitch in in left arm and then my thumb and finger.
"Eventually the twitch turned into a tremor in my left arm and once it reached my left leg I knew what was happening.
"I saw a neurologist at the age of 48 and was told I had Parkinson's disease. At the time, I was told I probably had five good years left and [I should] 'take a tablet if I felt I needed it'.
"All I really knew about Parkinson's was that it was degenerative and there was no cure. I had so much fear about my future and for what impact this would have on my daughters. I did not want them to have to become my carers."
Five years later, Jen says she is much more informed and knows that there was life after diagnosis - including working.
"I know that fighting with every inch of our being is what every person living with Parkinson's does," she says.
"I am nowhere near finishing work yet. I have so much more to do with my life."
An estimated one in five people diagnosed with Parkinson's are considered to have "young onset" Parkinson's - people who were diagnosed under the age of 50, and are often still working, studying, travelling and caring for their families.
Canberra man Anthony Overs, now 48, was diagnosed at 46, after noticing rigidity and slowness of movement on his left side as well as fatigue.
He has since helped to establish a new support group under the guidance of Parkinson’s ACT (PACT) – called Young at Park (Y@P).
"Young onset people can have great difficulty in coming to terms with their diagnosis," Anthony says.
"They are often concerned about the potential implications of the disease on personal, family and work commitments and responsibilities.
"The challenges they face may be different to those diagnosed beyond retirement age and the typical support group is often not suitable for them - as I, like many others, found out the hard way.”
Thirty-seven Australians are diagnosed with Parkinson's disease each day, and the signs and symptoms are different for everyone.
Jen and Anthony both lead active and full lives, working and raising their families, playing sports, and travelling.
Anthony will also be speaking at the seminar on November 29, which runs from 9am to 4.45pm. It will focus on treatment pathways, mental wellness, current research and exercise as medicine.