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I was wide awake during my brain surgery for Parkinson's. Here's how it changed my life

I was wide awake during my brain surgery for Parkinson's. Here's how it changed my life

CBC
Monday, February 20, 2023 02:00:51 PM UTC

This First Person article is written by Harry Forestell, host of CBC News New Brunswick at Six, who draws upon his experiences with Parkinson's disease.

My latest party trick is a real attention grabber.

It's a vivid illustration of the before and after effects of my recent treatment for Parkinson's disease. Proof of just how much a little poking around in the brain can achieve. 

The treatment is called deep brain stimulation (DBS). It involves implanting thin electrodes into the brain where they emit tiny electrical pulses. Those pulses, applied continuously to just the right section of grey matter, stimulate centres in the brain that control signals sent to your muscles. In the basal ganglia, the engine house of the brain, signals are sent to the body ordering everything from speaking, to swallowing, to walking and touching. When those signals don't get through, or when the instructions get scrambled, the body's reaction can be cruel. Hands tremble uncontrollably, legs shake, walking becomes increasingly difficult, even swallowing is a challenge.

These are all early symptoms of Parkinson's disease and the list is by no means exhaustive.

More than 84,000 Canadians suffer from symptoms of Parkinson's disease. From 2011 to 2031, the number of Parkinson's cases in Canada is expected to double.

Parkinson's is considered a chronic but not fatal disease. As neurologists will often explain, you will die with Parkinson's, not from Parkinson's. While true, it doesn't really capture the creeping, insidious progress of the disease as it deprives victims of the ability to control their own bodies.

Medical stories like this have always been a source of fascination for me. I worked for several years as a medicine and science reporter, covering stories that included the panic over mad cow disease in the U.K. I produced radio features on brain development and decay.

Little did I know that I eventually would be reporting on my own brain malady.

The day my diagnosis of Parkinson's disease was officially confirmed came as much of a relief as a shock.

It was 2015 and for the previous two years, my wife Jenny and I had been careering back and forth between hope and despair. My Fredericton neurologist, Dr. Eva Pniak, a patient and persevering soul, suspected Parkinson's, but suggested the problems I experienced walking and with my tremoring hands could also be explained by a modestly more benign condition called essential tremor.

She referred me to a specialist in Toronto where the diagnosis was conclusive.

At 53, I had Parkinson's.

From leaping out of a tree to dancing the tango, very little happens in the body without first being ordered by the basal ganglia. Those orders are sent at the speed of light through nerve networks with the help of a neurotransmitter called dopamine. It is the as-yet unexplained decline in the brain's dopamine-producing cells that leads to movement disorders like Parkinson's.

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