'It's inhumane': B.C. Parkinson's patients frustrated with long waits for life-changing surgery

Some B.C. Parkinson's disease patients are speaking out about the lengthy wait time for a surgical procedure that can drastically reduce symptoms associated with the neurological condition, such as tremors, rigidity and slow movement.

Only 1 doctor in province does deep brain stimulation procedure — and there's a 3-year wait for consultation

Rob Mallett has been waiting for deep brain stimulation surgery for nearly three years to reverse the symptoms of Parkinson's disease. (Brady Strachan)

Rob Mallett takes medication every two hours to control the symptoms of a disease that is robbing him of the active life he was once able to enjoy.

The retired high school teacher in Kelowna, B.C. is one of approximately 13,000 British Columbians with Parkinson's disease, a neurological condition that causes symptoms of tremors, rigidity and slowed movements. 

"When my condition gets worse as the day goes on I become stiff and uncoordinated and I have to use a cane to get around," Mallett, 74, said, adding the disease has affected the quality of life for him and his wife.

"We don't really have much of a social life in the evening, which is really tough."

A surgical procedure called deep brain stimulation (DBS) could help alleviate Mallet's symptoms, but there is only one doctor in B.C. doing the surgery and there's a three-year wait for a consultation.

The waits have affected the quality of life for others living with the disease.

Symptoms worsen

In Fort Langley, B.C., Tom Armour is also suffering from symptoms associated with Parkinson's disease.

For Armour, the disease expresses itself as tremors and dyskinesia — uncontrolled and involuntary wriggling and swaying — which has worsened since he was diagnosed eight years ago.

"I have difficulty dressing myself and feeding myself. Socializing is very, very difficult," Armour said.

"I have difficulty dressing myself and feeding myself. Socializing is very, very difficult," says Tom Armour. (Supplied by Tom Armour)

Both Mallett and Armour are waiting for the DBS procedure.

During the procedure, a physician implants electrodes in the brain of patients that deliver electronic pulses which alter activity in that area of the brain.

A battery-powered device, similar to a pacemaker, is implanted in the patient's chest to generate the pulses.

This treatment is not a cure for Parkinson's but it alleviates symptoms.

Long waits

Right now, there is only one doctor in B.C. doing DBS surgery although another doctor has been trained in the procedure, according Jean Blake, CEO of the Parkinson's Society of B.C. 

Currently, someone diagnosed with Parkinson's in B.C. will wait three years for a consultation with the surgeon and another two years to have the procedure.

Rob Mallett has been waiting for three years and for Tom Armour, it's been over five years.

Meanwhile, the symptoms of Parkinson's disease are progressing in both men.

"It's inhumane to expect for someone to live like this when there is something available," said Blake.

Patients in Saskatchewan, Ontario and Alberta typically wait six months to a year for the procedure, according to Blake.

"We are way, way far behind [other provinces] and the situation is really sad," she said.

The Parkinson's Society of B.C. has gathered more than 9,000 signatures in an online petition asking the Province to expand the DBS surgery program. 

A return to normalcy 

In Kelowna, a few kilometres from Rob Mallett's home, Garry Toop is finishing up an oil-based painting of an Okanagan landscape.

Two years ago, painting a straight line would have been impossible for Toop, but today, symptoms of his Parkinson's disease are barely visible.

"If you saw me before I had the procedure I was waving around like a flag," said Toop, 68, adding the surgery has given him his life back.

"It's wonderful actually. It frees me up to be more involved socially."

A pacemaker-like device installed under the skin of Garry Toop's chest sends electric pulses through wires deep into his brain, which alleviates the tremors and shaking symptoms characteristic of Parkinson's disease. (Brady Strachan/CBC)

It's a sense of normalcy and freedom Rob Mallett and Tom Armour dream of returning to one day.

Mallet said he's ninth on the waiting list for DBS surgery.  Armour said he hasn't been informed when his name will be called."

"It's very frustrating," said Armour.

"Not only is there an extra surgeon available, there's operating space available and staff that has been trained and all it would take is to cut a cheque."

Both men, and their families have been writing letters to Health Minister Adrian Dix asking for more funding for DBS surgery.

Increase in number of surgeries

On Thursday, during question period in the provincial legislature, B.C. Liberal Party MLA Greg Kyllo brought up Mallett and Armour's stories to push for faster access to DBS surgery.

In a response, Dix said the province has increased the number of scheduled interventions this year from 23 to 36 surgeries.

Dix said the Vancouver Costal Health and Fraser Health authorities are working to set up the infrastructure for a second surgeon to start performing the procedure.

"I hear people across B.C.. I know the struggle that they face and I am aware of it and working hard on it," Dix said.

Meanwhile Rob Mallett and Tom Armour's symptoms continue to worsen — such is the degenerative nature of Parkinson's.

Both men hope their names are called for DBS surgery while their window of opportunity for the procedure remains open.

About the Author

Brady Strachan

CBC Reporter

Brady Strachan is a CBC reporter based in Kelowna, B.C. Besides Kelowna, Strachan has covered stories for CBC News in Winnipeg, Brandon, Vancouver and internationally. Follow his tweets @BradyStrachan