“Every day, every hour, every minute is unpredictable”: How I’m adjusting to life with Parkinson’s

When Emma Tinkler was finally diagnosed with Parkinson’s disease, she had been living with it for two difficult years.

Despite the shock, the news proved to be a profound and hopeful turning point in her life.

Emma’s symptoms began on a walk in 2019, when she experienced a strange sensation in her left foot. “I had to think about picking it up,” she told The Shake It Up Show.

“I thought ‘that was a bit weird’. It wasn’t painful or anything, just a little strange.”

A few days later, she found her left arm stopped moving so easily.

Initially, her neurologist dismissed it as a complication of her existing Multiple Sclerosis, a condition she had luckily managed up to this point with “minimal symptoms”. Her issues were later misdiagnosed as Functional Neurological Disorder (FND).

“It was an awful time, and it all happened slowly,” she said. At first she could still comfortably walk, sprint and climb, but it was the little functions — like drinking or texting — that became distressingly difficult. Soon it was taking her hours to leave the house, and basic mobility became a huge issue.

After intensive rehab and switching to a mobility scooter, she decided to get a second opinion. Finally, she was told she had early-onset Parkinson’s.

Finally, she could receive the life-changing medication that could help her reclaim her quality of life.

“It was like a phoenix rising from the flames,” she recalls. “My friends and family — I’ll never forget the joy in their faces when they saw me walking again.”

Even with the right support, Parkinson’s continues to affect her day-to-day routine in unexpected ways.

“I can be punching a bag with my boxing coach one minute, and the next I can’t even hold my phone. That’s what people don’t understand — how unpredictable this disease really is.”

Medication has played an important role in helping her cope with Parkinson’s, but it currently isn’t enough — and Emma is now passionately advocating for more research.

“Even though we’ve got fabulous medications, we still need the answers.” – Emma Tinkler, Shake It Up advocate.

Parkinson’s is the fastest-growing neurological condition in the world, with over 200,000 Australians currently living with the disease — and 38 more being diagnosed every day.

It is progressive, unpredictable and currently incurable. Research is critical to finding better treatments to slow, stop and, ultimately, cure Parkinson’s.

“Research for Parkinson’s is important for me because it will give over 10 million people around the world peace in their bodies and peace in their minds,” says Emma.

“It really is hope because even though it’s not for yourself, it’s hope for your kids and the people that come behind us.”

“To have that hope that people are in your corner and trying to get you out of it… things like that just keep you going.”

Watch Emma’s story below:

How you can contribute to Parkinson’s research

Research isn’t just about dollars — it’s also about the people.

Shake It Up Australia Foundation is spearheading the conversation around how we can focus our efforts into finding a much-needed cure for the condition.

Partnered with The Michael J. Fox Foundation, Shake It Up reinvests 100% of every donate dollar back into life-changing research projects across Australia. Their efforts aim to accelerate research and find a cure — and with your help, we can get one step closer to eradicating this disease for good.

Learn more about Shake It Up below:

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.