“Parkinson’s can be an incredibly isolating experience for people.”
Jen Harkness was diagnosed with Parkinson’s at age 48, after experiencing symptoms for around four years.
“It is stereotypically an ‘old person’s disease’,” she says.
Parkinson’s disease is a progressive, neurological condition, with four general groups of symptoms: tremor, bradykinesia (slowness of voluntary movements), muscle rigidity and postural instability. There is currently no known cure.
It is estimated that around 20% of new Parkinson’s diagnoses are people who are under 50. Jen and friends Lindy Lawrence and Martin Simms, were all under 50 when they were diagnosed. Each had, and have, different symptoms to one another.
“Parkinson’s is a very unique illness because nothing’s the same [as another person],” Jen says.
Parkinson’s ACT (PACT) is a not-for-profit organisation that provides support, information and education for people in the Canberra region living with Parkinson’s.
PACT President John Sheldrick says the organisation estimates there are around 1,000 people living with Parkinson’s in Canberra, and around 1,500 in the wider ACT region.
“Importantly, it can affect people in their 30s, 40s and 50s,” he says. “Young onset is of particular concern, it’s quite debilitating from that point of view.”
Of concern to PACT is the small number of people accessing their support services. Of the estimated 1,000 people living with Parkinson’s in Canberra, just 180 are members of PACT.
PACT offers a range of support groups, for young onset, women with Parkinson’s, carers, male carers and a general support group. PACT also offers the Tingey Painting with Parkinsons program and Offbeat – dance for people with Parkinson’s.
Jen says for those who access the available supports, they are incredibly important.
“For the people that do attend, they are vital. It’s vital for their wellbeing.”
PACT is aiming to spread the word about available support, hosting a seminar for people with Parkinson’s, family members, carers and medical and allied health professionals to gain an insight into the world of Parkinson’s. The seminar will hear from four specialist speakers, and will offer people with Parkinson’s a chance to access new information and support networks.
“It’s about giving everybody the best chance of having the best life they can,” Jen says.
The Parkinson’s ACT seminar will be held on Thursday 29 November 9am-4.45pm at Canberra Southern Cross Club, Woden. For more information or to register, visit parkinsonsact.org.au