For Jen Harkness, the knowledge she's not alone helps her lead a full and active life while living with Parkinson's disease.
But she knows the sense of hopelessness that not having a good support network can bring.
She has young onset Parkinson's, diagnosed when she was 48. Now 53, she works full time and finds regular exercise provides both mental and physical benefits.
Groups like Parkinson's ACT help her stay connected, but she thinks many people in Canberra are going without support because they don't know where to find it.
Data released today from the Institute of Health and Welfare shows between 2013-17 the ACT had one of the highest rates of deaths from Parkinson's in the country - 30 per cent higher than the national average.
During that period, there were 7.5 deaths per 100,000 people when standardised for age. ACT was one of the only jurisdictions where it rated as one of the top 20 causes of death.
The data showed coronary heart disease continued to be the biggest killer in the ACT and across the country. ACT had above the national rates of deaths in bowel cancer, breast cancer, cardiac arrhythmias, hypertensive disease, Parkinson's disease and brain cancer.
ACT men were more likely than women to die from Parkinson's disease, liver cancer, brain cancer. The most common cause of death for women was dementia and Alzheimer's disease while for men it was coronary heart disease.
Ms Harkness there needed to be extra support for Parkinson's sufferers in Canberra, which could made a world of difference to a patient's outcomes. She deals with depression and apathy and must follow a strict medication regime to keep tremors at bay. She also has bladder control issues and has lost her sense of smell.
"Being told you've got Parkinson's is not the greatest thing because of the stereotypes. I was thinking I was going to be in a nursing home in my 50s. The more support people have the more people know what's available," Ms Harkness said.
"When people get diagnosed we should be giving them a phone number. Parkinson's ACT might not have all the answers but we can say this is where you can get help."
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