Landing on lily pads

Wellington resident to receive “brain pacemaker”

Chemical engineers have had at me for the past 18 years,” said David Simmonds, writer and musician as well as columnist with the Times. “Now I’m ready to let civil engineers have a go.”

David was diagnosed with Parkinson’s disease in 1993. He wasn’t yet 40. He had two young children (Erica, 10 and Jeremy, 8). He was a trust attorney at a high powered law firm in Ottawa. His wife Michelle was a practising palliative care physician.

When the pains started in his arm, David shrugged it off as muscle strain. It wasn’t long, however, before a specialist was sitting across a desk explaining to him he had Parkinson’s disease.

His first reaction was typical for those who know him: “It could be worse.”

Parkinson’s is a degenerative central nervous system d i s e a s e that gradually robs individuals of their ability to control movement. Symptoms vary, but the most common include shaking, rigidity and slowness of movement. It is not life-threatening, but the disease seeks, over time, to define every aspect of your life.

Parkinson’s symptoms typically appear later in life. David was among the relatively small cohort of those diagnosed with early onset Parkinson’s disease, which poses some distinct challenges.

Drugs can control or at least manage symptoms, but over time the effectiveness of the drug regime wears off; higher doses are required and the risk of complications resulting from side effects climbs. Eventually another course must be considered.

Initially, David responded to the diagnosis by taking on a heavier load at work. But as the years passed, he felt he was slipping— unable to be decisive or as effective as he felt he should be.

He left the law firm in 2000.

In the meantime he had become active in the Parkinson Society of Canada (PSC), serving as its chair between 1999 and 2001. In 2000, the PSC created the David Simmonds Leadership Award to honour his “unique contribution and charisma…who through his exceptional vision, leadership and negotiation skills, perseverance and commitment redefined and strengthened the voice of those living with Parkinson’s in Canada.”

In 2008, he and Michelle sought out a quieter and more manageable life in Wellington. Here he has found new inspiration for his music and writing.

The disease, however, has continued to march on. He was told in 1993 he would likely have about five good years.

“I’ve had 18 good years and looking forward to 18 more,” said Simmonds, “and dammit, I’m going to make sure they are good years.”

On Thursday, David travels to Toronto Western Hospital. On Friday he will undergo a surgical procedure in which a lead (a thin electrical cable) with as many as eight electrodes will be inserted deep into his brain. He will be awake during the procedure, working with the surgeons as they tune the device.

Each electrode will fire minute electrical pulses into David’s subthalmic nucleus, stimulating the portion of his brain that governs motor control. It is not entirely clear how deep brain stimulation (DBS) works, but the pulses appear to block the abnormal firing of neurons caused in Parkinson’s by a lack of dopamine, a brain chemical used to transmit nerve-cell signals.

Once the electrodes are programmed, the surgeons will then feed a wire from the lead underneath the skin behind David’s ear down to a battery pack that will be inserted in his chest just below his collar bone. DBS won’t cure David’s disease. But it should reduce his reliance on medication. Many who have had DBS report a greatly improved quality of life—some are nearly symptom-free.

He understands the risks. He has been researching and undergoing tests in preparation for this procedure for many months. Further, he has thought through the prospect of becoming wired and reliant upon a medical system that acknowledges that it doesn’t fully understand the brain and how it works. Though the procedure isn’t experimental, it was only developed six years before he was diagnosed.

“I see it as an investment rather than a treatment,” said David. “It is my best guess in achieving the future I want.”

He has the full support of his doctors and his family.

Throughout his journey with Parkinson’s, he has tried to stay positive. In 2002 he and a group of friends recorded one of his compositions entitled “I won’t.” The proceeds from the song help to support the work of the Parkinson Society of Canada.The song sums up well David’s outlook on life with Parkinson’s— choosing to see the good rather than be mired in the bad.

I won’t slip quietly out of sight,
I won’t give an inch that isn’t taken from me
I won’t demand there be an explanation
And I won’t see darkness, I’ll see light.