Taking Parkinson’s in her stride

Being afraid of her own shadow took on a new meaning 16 years ago for Parkinson’s disease sufferer and advocate Karyn Spilberg.

Ms Spilberg, 60, had been taking a walk and this stroll seemed no different to the many others she had been on … at least, until she looked at her silhouette on the ground.

“When I saw my shadow, I realised that there was something wrong. It looked like my right arm was just hanging and my leg was dragging,” she told YourLifeChoices. “I wondered if I’d had a stroke.”

There are no clinical tests to detect Parkinson’s disease, she said. Diagnosis is based on a range of symptoms that vary from person to person.

But her understanding of the disease, having watched her father struggle with Parkinson’s, helped her doctor reach a quick conclusion.

“Receiving the diagnosis was initially a shock, but I quickly came to terms with it and decided to stay positive,” she said.

“My dad had it and I could see it wasn’t the end of the world. It came with some limitations, but there were still many things I could do.

“Plus, I remind myself that there is always someone else who is worse off than me.”

So far, a cause has not been identified, although scientists believe certain gene mutations may be responsible for the disease. One finding that is clear is that sufferers have a low level of a brain chemical called dopamine. Dopamine helps the brain control muscles and moves the body slowly and easily.

Parkinson’s is a progressive neurological condition characterised by involuntary movements, such as shaking, rigidity and difficulty walking, according to Parkinson’s Australia. It can also include non-motor symptoms such as pain, sensory changes, gastrointestinal system changes, depression and problems with memory, thought and sleep.

An Australian study in 2011 estimated that about one in 350 Australians had the condition. Today it is closer to one in 300, or approximately 80,000 people, making it one of the most common neurological conditions, second only to dementia.

The condition can strike in early adulthood, but most of the new cases detected afflict people who are older than 65.

Despite the challenges Ms Spilberg faces with her mobility, her doctor’s early advice was not to sit still. And she didn’t. When she realised that her life would never be the same again, she quit her job as a primary school teacher and set off to travel the world.

“I was having problems writing – it was becoming increasingly illegible,” Ms Spilberg said.

When she stopped working, she became heavily involved in Parkinson’s advocacy. In particular, it was her love of a good promenade that sparked her interest in Parkinson’s disease fundraiser Walk in the Park. This year’s Victorian event will mark the 10th anniversary since it was launched.

Ms Spilberg, who has been associated with the walk every year, regularly hosts the largest ‘team’. Dubbed Karyn’s Crowd, most years about 100 family members and friends, plus her dog Molly, join her for the stroll.

“The whole walk is a buzz … to see over 100 friends on the day willing to give up a Sunday morning to support me and my cause means so much to me,” she said.

A Parkinson’s Victoriaboard member and recipient of the Sir Zelman Cowen Award for her services to the community, Ms Spilberg started [email protected] in 2005. The group aimed to connect sufferers who had acquired Parkinson’s earlier in life than usual, like her. Today, the group also has a website that allows for wider connection and sharing of information and personal stories.

“I started [email protected] for those diagnosed at a young age who had different issues to those of traditional sufferers, such as wanting to remain in the workforce.

“My advice to a newly diagnosed person would be to … stay positive and keep moving. My neurologist told me years ago to ‘travel while you can’.”

Since her diagnosis, she has been on many overseas trips for holidays and to attend conferences on behalf of the Parkinson’s community.

Ms Spilberg has been chosen as one of two Australian ambassadors for the Fifth World Parkinson Congress, being held in Kyoto, Japan, in June next year.

Asked how she copes on overseas jaunts, she says it takes good planning and plenty of rests.

“Parkinson’s is frustrating. Everything seems to be linked to it: gait issues, soft voice, fatigue.

“One treatment that has helped to improve my quality of life is the deep brain stimulation (DBS) I had in 2011.”

She said the procedure involved “drilling a couple of holes” in her head to implant electrodes linked to a neurostimulator. This device, known as a brain pacemaker, sends electrical impulses to parts of the brain to treat movement disorders.

“When my surgeon first proposed I get the implants, I was not keen. It took him two years to talk me around.

“He convinced me that having brain surgery was no more dangerous than having a knee operation,” she said.

“I am glad I trusted him because DBS gave me back my independence.”

Ms Spilberg’s bucket list is further proof of her courage and zest for life. Close to the top are a 20-minute dash on the back of a Harley-Davidson motorbike and hot air ballooning.

If you would like to join the Walk in the Park fundraiser on Sunday 26 August, meet atFederation Square on the corner ofFlinders Street inMelbourne’s CBD at 9.30am. There are two kilometre and four kilometre courses, with entertainment, rest stops and water stations along the way.

For information on raising funds for Parkinson’s in other states, visit Parkinson’s Australia.

Related articles:
A disease worse than Parkinson’s
How to spot Parkinson’s
How Mary manages

Written by Olga Galacho

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