A day in the life of…

Karyn Spilberg was like any other woman. She enjoyed keeping fit and feeling the wind rush past her face as she pedalled hard on her bicycle – until one day a routine power walk with her friend Debbie changed her life.

Speaking to DPS News, Ms Spilberg recalls how her left arm was hanging while her left foot dragged along the ground as she walked. Fearful she had suffered a stroke, she immediately visited a GP who booked her in to see a neurologist the next day.

Claiming to have seen the worst of the effects Parkinson’s disease had on her father who was diagnosed at the age of 63 years, little did Ms Spilberg know she too would be diagnosed with the same disease at just 44 years of age.

Diagnosed on the spot as having Parkinson’s disease, Ms Spilberg began her journey to educate and support others suffering with early-onset Parkinson’s disease.

Fortunate to have never experienced tremors, known as one of the most common Parkinson’s symptom, Ms Spilberg says it is important to understand while some Parkinson’s patients experience tremors (or shakes), others may feel a sense of “stiffness” which is what she often experienced.

After years of treatment in the form of tablets, Ms Spilberg’s journey took a different direction this year when she underwent deep brain stimulation (DBS).

What is DBS and how does it work?

DBS is a form of brain surgery where wires are positioned deep within the substance of the brain, and according to Ms Spilberg, acts as a “pacemaker” in the brain to disrupt
electrical signals from targeted areas in the brain.

Ms Spilberg’s DBS was done in two parts. She was awake during the first five-hour stage process where doctors inserted the probes into her brain.

The second part of the surgery involved Ms Spilberg being put to sleep while the device controlling the probes could be inserted into her chest.

Ten days later, the doctor set the level to one volt on each side, and as he did it, Ms Spilberg recalls feeling a “fuzzy rush” up each side of her head.

Recovery

While DBS may seem like a gift from god, “it is not a cure; [but] more of a mask”.

“The disease progresses as it would, prompting adjustments, and if switched off, I would revert to a more advanced disease state,” she admits.

She has travelled the world, and rode a pushbike around Vietnam to raise funds for Parkinson’s, and has also walked in the New York Unity Walk, attended numerous world conferences and is an ambassador for Parkinson’s Victoria. Adding to her list of achievements, Ms Spilberg heads a group of young people diagnosed with Parkinson’s disease, called ‘YAP- Young@Park’.

To those experiencing similar circumstances, Ms Spilberg offers some wise advice.

“I’ve always been a positive person. Having Parkinson’s is not the end of the world. There is
someone always worse off than me.

“People say you don’t die of Parkinson’s, you die with it… it’s not something that is going to kill you; and it is easier to keep going than it is to give up.”

So, in the words of Albert Einstein – “Life is like riding a bicycle. In order to keep your
balance; you must keep moving”. And now, with regained confidence and renewed enthusiasm, Ms Spilberg is back on her bicycle and enjoying life.

Do you have a loved one who remains positive and strong during adversity? Share your experiences by commenting in the box below.