Jen Harkness was told she had five “good years” of her life left when she was diagnosed with Parkinson’s disease at age 48.
“I was shattered, absolutely shattered,” Ms Harkness said.
“I did a lot of crying. It’s a grieving process you go through. It’s the fear of what’s coming, because we don’t know what’s coming.”
But that “life-altering” diagnosis was a decade ago, and while some of her symptoms have progressed, she is “still having a good life”.
“So, the doctor was wrong,” Ms Harkness said.
“I now tell people ‘don’t let people put time limits on you. You set your own course and you put your own time limit on yourself’.”
Her symptoms began about five years before her official diagnosis — a slight twitch in her thumb turned into a tremor in her arm and leg, and she lost her sense of smell and felt constantly tired.
“The doctor diagnosed me and then gave me a prescription and basically told me ‘take this if you want’,” Ms Harkness said.
“I had no information about Parkinson’s, I had no information about support groups, I had no information about where to go.”
It was a “horrific” time, according to Ms Harkness, until one day “when I just said, ‘stop, you haven’t got time for crying, you actually need to get on with life and start living’.”
And that’s exactly what she chose to do, completing a scuba diving course, which she described as her “therapy”.
Her passion now is raising awareness about Parkinson’s, in an effort to change the perceptions of the disease.
“If you Google Parkinson’s, you see an old man who is hunched over. You see the bad side of it,” Ms Harkness said.
Connecting young onset patients
Parkinson’s disease occurs when the nerve cells in the brain don’t make enough dopamine, which affects movement and mood.
Each day, up to 50 Australians are diagnosed, and according to Parkinson’s Australia, more than 1,100 Australians aged under 65 are diagnosed each year.
There’s no cure and a diagnosis is often described as a life sentence, but not a death sentence.
Symptoms and progression vary widely, making each person’s journey with the disease unique.
Ms Harkness said it was “frightening” not knowing when her symptoms might get worse, but “that is why I fight to stay as well as I can”.
“I don’t tend to think too much about the end or what is going to come, because that will impact on now and I just want to have a great life now.”
She wants to bring others with young onset Parkinson’s together, to give one another hope.
“I will quite often sit down with people who are newly diagnosed, because if they see me at 10 years [post-diagnosis], I can see the colour starts to come back into their face and they start breathing a little bit better,” she said.
“The fear at diagnosis is huge, if we can take that fear away by connecting people, I think that is such a huge thing.”
However, Ms Harkness said there was a lack of broader supports for people diagnosed with the disease at a young age.
“When we don’t acknowledge that there are people who are still of working age with Parkinson’s, we are not looking at resources within the workforce and society,” she said.
“When people don’t come out with their illness, they don’t get the appropriate help, they don’t get early invention stuff which is so vital to stopping the progress.”
‘People with Parkinson’s can still live big lives’
One of the people Ms Harkness has connected with is Jeff Smart, who was diagnosed at the age of 51.
“It took me about two or three years to get a diagnosis, because my doctor thought I was too young to have Parkinson’s,” Mr Smart said.
Since his diagnosis, Mr Smart said he had realised how exercise could help, finding a passion for multi-day walks.
Last year, he walked more than 1,000 kilometres along the Camino Trail, across France and Spain.
“Just because you have Parkinson’s doesn’t give you an excuse to sit on the couch, and walking is one of the best exercises you can do,” he said.
“One of the reasons I walked was because I wanted to show people that people with Parkinson’s can still achieve and live big lives.
“I’m not ashamed to say I have got Parkinson’s and I tell people not to be afraid of a diagnosis. Early supports give you a much better lifestyle than if you just hide away in the corner.”
Invest in your health early
Simon Lewis, a professor of cognitive neurology at Macquarie University, said while Parkinson’s was “often viewed as an old person’s disease” around five per cent of patients are under the age of 40, and around 10 to 15 per cent are aged between 40 and 50.
“We’re increasingly seeing, I think, more patients who are getting diagnosed at an earlier stage,” Professor Lewis said.
“I think we are very mindful of that proportion of patients who are younger and have different needs to our older patients.”
Professor Lewis encouraged people diagnosed young to invest in their health.
“If you are diagnosed in your 40s, this is a disease you are probably going to have into your 70s and everything you do before that is critical to how well you stay over that duration,” he said.
“We want you to invest in your core strength, your balance, exercise, speech therapy and they think ‘well, I am OK at the moment’, but in actual fact, you are investing for the future.”
There is support available through the National Disability Insurance Scheme (NDIS) for people with Parkinson’s under the age of 65, but Professor Lewis said many people don’t realise they could access it.
A spokesperson for the National Disability Insurance Agency (NDIA) said the NDIS “provides support for eligible individuals with degenerative conditions, and acknowledges the progressive nature of conditions such as Parkinson’s disease.”
“The NDIS aims to prioritise planning decisions where possible, and funds a range of supports and services which may include social participation, independence, living arrangements and health and wellbeing.”
As of March this year, there were 23,041 active NDIS participants whose primary disability fell under other neurological conditions such as Parkinson’s disease.
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