Victorian dad Jack Lord Gamble has “always been a bit wobbly”.
The 37-year-old was just someone who “had a tremor from time to time”.
However, when friends grew concerned about his deteriorating condition, the Melbourne dad knew something more serious was at play.
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Then came the news that turned his world upside down – Jack has Parkinson’s disease.
“It’s been tough, definitely more difficult than I realized,” he told 7NEWS.com.au.
While coming to terms with life-altering condition took time, Jack hopes his experience can help others realize they are not alone and dispel common misconceptions.
About 38 Aussies are diagnosed with Parkinson’s every day. In 2018, Jack found himself among those statistics.
Parkinson’s is not uncommon in people under 50, with only 10 to 20 percent of people with the disease experiencing symptoms before that age.
Jack belongs to the small subset of sufferers who are struck early and diagnosed with “young oset Parkinson’s”.
“I didn’t notice it at first, but the people around me did,” he said.
“When it really started to affect me, my right side of my body was impacted. I was slow and stiff, my arm wasn’t swinging, I was having trouble moving. ”
After several specialist appointments, the then-33-year-old finally found answers.
“I was joking about it being Parkinson’s when I was getting checked out. I didn’t actually expect it, but it made sense, ”he said.
While most people might be overcome by fear of the unknown upon hearing such a diagnosis, Jack says “weird” was his most notable feeling.
“It was a pretty bizarre moment for me. I guess it was also good because I finally knew what was going on and (the specialist) started me on some medication which really helped. ”
Coming to terms with it
The father-of-one spent years working in the healthcare industry as a support officer and a paramedic and most recently split his days between providing crisis support for victims of violence and spending time with friends.
However, his earth-shattering diagnosis forced him to leave his working world behind and learn to let go of the life he used to know.
“The thing that’s been the hardest for me has been fatigue and cognition, that’s been the most disabling factor with work,” Jack said.
Patients with Parkinson’s disease often describe their fatigue as as a type of exhaustion that makes it feel impossible to move, as though simple daily tasks are too tiring.
For Jack, working became impossible. Now, he spends most of his days at home.
“It simply came to our notice then. As a young man a lot of your identity and self-worth is attached to what you do as a career and that forms a lot of your ego, ”he said.
“Being in the health space for so long and then moving across to being the patient, I found that quite challenging.”
“Now I mess around with a bit of art stuff and spend time reading and doing exercise, which is good for Parkinson’s.
“It can affect your executive function and my cognition wasn’t as good or sharp anymore.”
While he now spends his days at a much slower pace, Jack says he counts his blessings.
“I’m super lucky … I’m going through this experience in Australia rather than elsewhere where the health system isn’t as robust,” he said.
“We have a lot of great services here such as Shake It Up Australia and Fight Parkinson’s, which provide specialized health information and support.”
Taking a step back from work has given him the opportunity to focus on his little boy Huxley and take each new health challenge as it comes.
“Parkinson’s can affect your executive function. My cognition was not as good or as sharp anymore and you can get overwhelmed, which can make the symptoms worse, ”he said.
The disease is neurodegenerative, meaning it progresses over time. It can also manifest in different presentations and speeds in each person, Jack explained.
“It’s very slow, but there’s always that fear whenever you don’t have the capacity to do something and think ‘is this what’s happening or is it just a bad day?’,” He said.
Despite this, he’s still determined to live life to the fullest with his support system by his side.
“It’s been really hard for (my family). To see your kids get sick and have that experience is unimaginable, ”he said.
Parkinson’s is the second most common neurological condition affecting Australians, but its cause remains one of the least understood.
“People think it just affects older people, but that’s not the case,” Jack said.
“I was pretty young. Michael J Fox was in his late 20s. ”
The Back To The Future star was diagnosed with Parkinson’s at just 29 years old.
Thirty years on, the award-winning actor says living with the disease is a “heavy thing” but he remains optimistic – an outlook Jack shares.
The disease can eventually strip people of their ability to walk and talk but, while he faces a daunting future, Jack says he is not afraid.
The young father wants others to know a diagnosis such as Parkinson’s, especially at a young age, does not have to mean you’re missing out on life.
On the brink of revolution
While scientists have made strides with research and treatment, there is still no cure for the disease.
A national research project, Australian Parkinson’s Genetics Study, is currently under way to help scientists crack the code of Parkinson’s.
Funded by Shake It Up Australia and the Michael J Fox foundations, the study aims to better understand the genetic basics of Parkinson’s to revolutionize future research into causes, treatment and prevention.
Participants complete a questionnaire and provide a saliva sample – something most people know how to do thanks to the pandemic, Jack joked.
“Having worked in health, I know the importance of evidence-based medicine and practice and if this can benefit someone down the line then why not take part,” he said.
“The more data and information we get the better the chances we have of helping me and future generations. Anyone with Parkinson’s should join the study. ”
SIUA CEO Clyde Campbell, who also lives with Parkinson’s, said the study opens up so many possibilities for learning about the disease.
“We are truly on the edge of a potential medical breakthrough in our lifetime, which could change the face of the disease,” he said.
“To make that possible, though, we need those living with Parkinson’s to sign up so we can understand its complexities.”