Before surgery, a metal frame was attached to Harry Forestell’s head to keep it still during an MRI scan. During surgery, the frame was bolted to the surgical table. (Submitted by Harry Forestell)
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.
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.
Harry Forestell shows how DBS therapy can work in daily life — and demonstrates what happens when he turns it off.
Little did I know that I eventually would be reporting on my own brain malady.
A shock of a diagnosis, and a relief
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.
These are just some of the drugs used to control Parkinson’s disease. While levodopa is initially the most effective medication, it produces side effects that require other drugs that produce their own side effects. (Harry Forestell/CBC)
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.
It’s a simple equation: no dopamine, no movement.
With Parkinson’s, those dopamine cells start quietly dying off years before symptoms first appear. Scientists aren’t certain why this happens, or why the process cannot be stopped or slowed.
Doctors can replace some of the lost dopamine with a medication called levodopa, but it causes a side effect known as dyskinesia — sudden uncontrolled muscle movements in the arms and upper body that create a writhing, torquing motion. As doctors increase doses of levodopa to stave off Parkinson’s tremors, dyskinesia increases.
The payoff is in quality of life for patients
Neurologists have been experimenting with DBS to treat Parkinson’s and other movement disorders for nearly 40 years. In 1997, the U.S.-based Food and Drug Administration approved DBS to treat Parkinson’s disease.
Why not more? The simple reason is that it is a treatment involving intricate brain surgery by highly specialized surgical teams and requiring considerable aftercare.
“The surgical expertise is extremely important,” he said.
A metal structure was bolted to Forestell’s skull prior to surgery at Toronto Western Hospital in September. (Harry Forestell/CBC)
“You have to have a surgeon that knows how to do the procedure and knows how to put the electrodes in the right spot. But then after the surgery, you need an expertise in doing all of the programming and adjusting the stimulators and also adjusting the medication doses which typically change after the operation,” he said.
“So it’s a very complicated procedure that requires a team and it’s the neurologist and the nurses after the surgery that are doing a great deal of the work in optimizing the responses.”
It is a procedure, Lang points out, that requires support from provincial governments. The payoff is a treatment that can offer major improvements in quality of life for Parkinson’s patients.
“The Ontario government has appreciated the importance,” said Lang, adding he feels lucky to have a team of expert neurosurgeons, neurologists, nurses and others to support patients.
“The government recognized the importance of this technique and have provided what’s called volume-based funding to allow us to operate on a much larger number than most centres.”
My own experience is a vivid illustration of the relief DBS can bring to some Parkinson’s patients.
Holes in my head
I waited a year or so before agreeing to undergo DBS. I had been told I was a good candidate (pending further testing) but needed to steel my courage. When I gave the thumbs-up, it took another year before I was ready for surgery.
I entered Toronto Western Hospital on Sept. 30, 2022 with an idea of what was going to happen, but no real appreciation of what it would feel or sound like.
I knew at some point before the end of the day someone was going to drill a hole in my head. At least one hole. Maybe two.
I was forewarned by reliable parties that the sound of that drilling would be akin to an airplane taking off. More like Concorde taking off inside my head!
Before surgery I had a metal structure bolted to my skull, not unlike the square lightshade at the top of a lamppost.
“Somewhere in the middle of all this is me, wide awake,” says Forestell. The clear plastic barrier divides the room into sterile and non-sterile zones. (Submitted by Harry Forestell)
This was meant to hold my head steady during the MRI scan and throughout the more delicate procedure of skewering my brain without damaging the useful bits.
In the surgical suite there was a bustle of activity as half a dozen surgeons and nursing staff prepared for the procedure. My head frame was bolted to the surgical table, and plastic sheets were draped over me to create an antiseptic site for the skull opening.
The drilling of two nickel-sized holes in my skull was every bit as loud as I had been warned. But no pain, just a feeling of pressure.
In the back of the suite, a cluster of medical IT specialists sat in front of computer screens ready to track and to provide feedback and directions as to where the probes needed to go in my brain.
I know all of this because I was awake — wide awake — for the duration of the six-hour long surgery. I have spent plenty of time around hospitals, both as a patient and as the child of a hospital worker. I’ve covered many medical stories as a reporter. So rather than fear, the prospect of this procedure filled me with curiosity. How would it feel? What would it change? Would it work?
A strange experience indeed
The surgical suite hummed with the normal hubbub of a workplace. The surgeons and I kept up an amiable conversation as I asked questions about what was happening. In the background, a steady staccato, like the noise of a Geiger counter, attested to the continuing activity in my brain.
Clicks coming through a loudspeaker amplified the activity of each busy cell.
It was a strange experience to have someone rooting through your brain.
A closer look at how the surgeons implant the sensors on Forestell’s brain that will eventually provide the electrical impulses to help override some of the physical symptoms of Parkinson’s. (Submitted by Harry Forestell)
There was no feeling to it as the brain has no pain sensors. But as the probes slid into place, there were tell-tale signs that gave away what was happening — most commonly a tingling feeling in an arm or leg — as the surgeons carefully threaded the electrodes through my brain to reach the basal ganglia.
Along the way they asked me whether I could recite the days of the week, the months of the year backwards skipping every second month, and the progression of prime numbers to the fifth integer.
Once the probes were in place, it was time to install the wiring and other hardware. For this part of the surgery, anesthetic was required and I was put soundly to sleep. Both probes are attached to wires that are threaded through the skull and under the skin behind the ear, down the neck, over the clavicle and finally are plugged into a battery-operated pulse generator — similar to a pacemaker — that sits just under the skin of the chest. While the surgery involves all the usual risks of infection, hemorrhage, stroke and heart attack, side effects are rare.
Once the electrodes have been implanted in the brain, their ability to deliver the required electrical stimulation is controlled by a pulse transmitter and an adapted cellphone.
Forestell one week post-operation. Aside from what he describes as a terrible haircut, the only sign of surgical intervention is the ‘railway track’ of staples closing the wound. The procedure took less than 48 hours from hospital check-in to discharge. (Harry Forestell/CBC)
The cellphone carries an app that controls the frequency of the electrical stimulation of the basal ganglia. The stimulator is set to discharge regular electrical pulses day and night that miraculously override or disrupt the scrambled neural instructions that are a Parkinson’s hallmark.
Suddenly I am able to walk normally. There are no tremors. The annoying signs of dyskinesia — those involuntary movements I described above — seem to disappear.
Harry Forestell opens up about the next stage in his treatment for Parkinson’s
The host of CBC New Brunswick News at 6 speaks with Rachel Cave about how deep brain stimulation is expected to help him deal with his Parkinson’s disease diagnosis.
Regaining control of motor functions is nothing short of a miracle, but it will not work for every Parkinson’s patient. Those with other conditions are not suited for DBS. It alleviates motor symptoms most successfully among those who respond well to levodopa. Where it is successful in those cases, it means a decrease in that drug and its side effects.
I have been able to cut my medication in half and I recently returned to work after four months away. I sleep soundly and, while I still tire easily, my mood has brightened.
Parkinson’s disease will continue to dog my life. DBS may allow me another 10 or 15 years without disabling tremors, though they will probably return at some point as they continue to grow in intensity. There are other insidious effects of Parkinson’s that are not affected by DBS.
But for the time being, it is as though the disease is caged.
On a leash.
I can hear it barking, but for now at least, it can’t bite me.
The Canadian government says it will donate up to 200,000 vaccine doses to fight the mpox outbreak in Congo and other African countries.
It says the donated doses of Imvamune will come from Canada’s existing supply and will not affect the country’s preparedness for mpox cases in this country.
Minister of Health Mark Holland says the donation “will help to protect those in the most affected regions of Africa and will help prevent further spread of the virus.”
Dr. Madhukar Pai, Canada research chair in epidemiology and global health, says although the donation is welcome, it is a very small portion of the estimated 10 million vaccine doses needed to control the outbreak.
Vaccine donations from wealthier countries have only recently started arriving in Africa, almost a month after the World Health Organization declared the mpox outbreak a public health emergency of international concern.
A few days after the declaration in August, Global Affairs Canada announced a contribution of $1 million for mpox surveillance, diagnostic tools, research and community awareness in Africa.
On Thursday, the Africa Centres for Disease Control and Prevention said mpox is still on the rise and that testing rates are “insufficient” across the continent.
Jason Kindrachuk, Canada research chair in emerging viruses at the University of Manitoba, said donating vaccines, in addition to supporting surveillance and diagnostic tests, is “massively important.”
But Kindrachuk, who has worked on the ground in Congo during the epidemic, also said that the international response to the mpox outbreak is “better late than never (but) better never late.”
“It would have been fantastic for us globally to not be in this position by having provided doses a much, much longer time prior than when we are,” he said, noting that the outbreak of clade I mpox in Congo started in early 2023.
Clade II mpox, endemic in regions of West Africa, came to the world’s attention even earlier — in 2022 — as that strain of virus spread to other countries, including Canada.
Two doses are recommended for mpox vaccination, so the donation may only benefit 100,000 people, Pai said.
Pai questioned whether Canada is contributing enough, as the federal government hasn’t said what percentage of its mpox vaccine stockpile it is donating.
“Small donations are simply not going to help end this crisis. We need to show greater solidarity and support,” he said in an email.
“That is the biggest lesson from the COVID-19 pandemic — our collective safety is tied with that of other nations.”
This report by The Canadian Press was first published Sept. 13, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
