Victorian father Jack Lord Gamble has “always been a little wobbly”.
The 37-year-old was just someone who “had a tremor from time to time.”
However, when friends became concerned about his deteriorating condition, the Melbourne father knew something more serious was going on.
For more health and wellness news and videos, visit Health and wellness †
Then came the news that turned his world upside down: Jack has Parkinson’s disease.
“It’s been tough, definitely harder than I realized,” he told 7NEWS.com.au.
While it took time to cope with the life-changing condition, Jack hopes his experience can help others realize they are not alone and clear up common misconceptions.
About 38 Aussies are diagnosed with Parkinson’s every day. In 2018, Jack was among those stats.
Parkinson’s is uncommon in people under the age of 50, and only 10 to 20 percent of people with the disease experience symptoms before that age.
Jack belongs to the small group of patients who are affected early and are diagnosed with ‘young onset 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 affected. I was sluggish and stiff, my arm didn’t swing, I had trouble moving.”
After several specialist appointments, the then 33-year-old finally found answers.
“I joked that it was Parkinson’s when I got checked out. I didn’t really expect it, but it made sense,” he said.
While most people may be overcome with a 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 think it was good too because I finally knew what was going on and (the specialist) started me on meds that really helped.
coming to terms with it
The father of one has spent years working in the health care sector as a counselor and paramedic, most recently splitting his days between providing crisis aid to victims of violence and spending time with friends.
However, his earth-shattering diagnosis forced him to leave his working world behind and let go of the life he once knew.
“What was most difficult for me was fatigue and cognition, which was the most disabling factor with work,” Jack said.
Patients with Parkinson’s disease often describe their fatigue as a form of exhaustion that makes it impossible to move, as if simple daily tasks are too tiring.
For Jack, work became impossible. Now he spends most of his days at home.
“It hasn’t been easy. As a young man, a lot of your identity and self-esteem is tied to what you do as a career and that’s a big part of your ego,” he said.
“Being in the health space for that long and then becoming the patient, I found that quite challenging.”
“Now I mess around with art stuff and spend time reading and exercising, which is good for Parkinson’s.
“It can affect your executive function and my cognition wasn’t as good or sharp anymore.”
As he passes his days much more slowly now, Jack says he is counting his blessings.
“I’m super lucky…I’m having this experience in Australia rather than anywhere else where the health system isn’t as robust,” he said.
“We have many great services here, such as Shake It Up Australia and Fight Parkinson’s, which provide specialist health information and support.”
Taking a step back from work has given him the opportunity to focus on his little boy Huxley and face each new health challenge as it comes.
“Parkinson can affect your executive function. My cognition wasn’t as good or sharp anymore and you can get overwhelmed, which can make 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 going very slowly, but there’s always that fear when 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 is still determined to live life to the fullest with his support system by his side.
“It has been very difficult for (my family). It’s unimaginable to see your kids get sick and have that experience.
To view this content, apply your †
Parkinson’s is the second most common neurological disorder affecting Australians, but its cause remains one of the least understood.
“People think it only affects older people, but it doesn’t,” Jack said.
“I was quite young. Michael J Fox was in his late twenties.”
The Back To The Future star was diagnosed with Parkinson’s at the age of 29.
Thirty years later, the award-winning actor says living with the disease is a “tough job,” but he remains optimistic — a prospect that Jack shares.
The disease can eventually rob people of their ability to walk and talk, but as he faces a daunting future, Jack says he’s not afraid.
The young father wants others to know a diagnosis like Parkinson’s, especially at a young age, doesn’t have to mean missing out on life.
On the brink of revolution
Although scientists have made strides in research and treatment, there is still no cure for the disease.
A national research project, Australian Parkinson’s Genetics Study, is currently underway to help scientists crack Parkinson’s code.
The study, funded by Shake It Up Australia and the Michael J Fox Foundation, aims to better understand the genetic basis of Parkinson’s to revolutionize future research into causes, treatment and prevention.
Participants fill out a questionnaire and provide a saliva sample — something most people know thanks to the pandemic, Jack joked.
“Having worked in healthcare I know the importance of evidence-based medicine and practice and if it can benefit someone later on, why not participate,” he said.
“The more data and information we get, the more likely we can help me and future generations. Everyone with Parkinson’s should participate in the study.”
SIUA CEO Clyde Campbell, who also lives with Parkinson’s, said the study offers so many opportunities to learn more about the disease.
“We’re really on the brink of a potential medical breakthrough in our lives, which could change the face of the disease,” he said.
“However, to make that happen, we need people with Parkinson’s to apply so we can understand its complexity.”