Health
I was wide awake during my brain surgery for Parkinson’s. Here’s how it changed my life
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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.
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.
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.
The procedure has been available in Canada since 2012. Fewer than 400 patients a year undergo DBS in Canada.
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.
Dr. Tony Lang leads the Toronto Western Hospital Movement Disorders Clinic, a world-leading centre for deep brain stimulation.
“The surgical expertise is extremely important,” he said.
“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.
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.
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.
A shocking conclusion
So, does it work?
Well, you can see the party trick I’ve been boasting about in the video above or by clicking here. You be the judge.
Here is how it works.
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.
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.
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.
Health
Funding runs out for COVID Assessment and Testing Centres – The Bay Observer – Providing a Fresh Perspective for Hamilton and Burlington
The COVID-19 Testing and Assessment Centre and the Flu, COVID and Cold Clinic at the West 5th Campus will be closed at the end of this month. The move is in response to a sustained drop in the prevalence of COVID-19 and a decline in appointment bookings for testing, attributed to uptake in vaccinations, higher levels of immunity, and declining circulation of the virus in the community. It also reflects the fact that provincial funding for these sites ends on March 31st. The Hamilton site was operated in conjunction with HHSC.
Says Dr. Greg Rutledge, Deputy Chief of Staff, St. Joseph’s Healthcare Hamilton. “It’s been a long time getting to this point where we see a significant drop in COVID-19 transmission.”
The hospital says Ready access to COVID-19 testing in the community through most pharmacies will meet the needs of the public and health care workers.
The move comes as the Globe and Mail published a story noting that these sites served the additional purpose of diverting many patients from Emergency Rooms. In the case of similar centres operating in the Toronto area, and estimated 14,500 potential ER visits were diverted.
According to the Globe and Mail, “Ontario Health described these clinics as a model for providing the right care to patients in the right place at the right time. They demonstrated an ability to optimize resources and reduce the burden on emergency departments. Most clinics have been set up in what are considered high-priority areas, located near public transit. All are accessible by wheelchair and able to provide translation in multiple different languages.” The article quotes Dr Sajjad Dr. Tavassoly, who works at a Brampton centre slated for closure as saying said what frustrates him most is the unmet needs of the community continue to grow, regardless of the government’s March 31 funding expiry.
More than 390,000 tests have been done at the West 5th Testing and Assessment Centre through the past three years.
The last day of operation for both the Testing and Assessment Centre and the Flu, COVID and Cold Clinic will be Friday, March 31, 2023.
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Science has developed the ability to research, develop and create functional cures for many of our so-called “incurable diseases”, but having the ability to do something and actually doing it are two different things. Medicine has always suffered from a problem with “knowing-doing”. It is the difference between what a doctor actually does for a patient and what can be done with all that we know. Developmental breakthroughs in medicine are allowing doctors to do things they never could imagine before. Sometimes these break-thoughts don’t fit into businesses/governmental financial or regulatory systems, meaning that it can take a long time for patients to actually benefit, a time many patients may not have.
The National Institutes of Health in America invest more than $40 Billion in biomedical research each year, and the private sector twice as much. The discoveries are valued by all, but why is it so hard to use these discoveries?
Science’s ability to engineer medicines has far outpaced how these medicines are actually built, tested, and put into human beings. Artificial Intelligence has assisted the community by mapping the human genome in efforts to cure various diseases. The US Government defines rare diseases as those that affect fewer than 200,000 people in America. Some affect only a handful of people. There are over 7000 different rare diseases, with more than 30 million people in America diagnosed with one of them. That is 10% of the US population. So improving how society can find and care for these patients could have a great impact. Problem is that the health system is not flagging enough people with these diseases, while many individuals don’t even know what disease they may have, or that they indeed have a disease. A.I. steps up front to assist in the recognition, tracking, analyzing, and identifying of these patients through computer-programmed systems. Put one’s symptoms into the machine, and often voila, a point from which a doctor can begin his medical investigation and treatment. A diagnostic odyssey in each individual case.
Artificial Intelligence has a prominent place within our health system, including helping design new treatments, helping predict which treatment is better for which patient, and screening for rare diseases with suggested diagnoses to boot. Why are many with rare diseases often left out in the cold, to search on their own for a cure? Money! Simple.
Who makes medicines, and invests millions in treatments and research for diseases? Pharmaceutical Firms.
What are they but profit centers for investment bankers, massive corporations, and a financial structure centered upon the shareholder, and not the average joe? Solutions can be found, but the willingness to spend way beyond what a firm can make in profits needs to be there. Sure our DNA is constantly changing, and evolving biologically. Making a drug that cures cancer, may cure some, but certainly not all forms since each person is unique, their biology specific to that person. Many doctors realize that their methods are much like witch Doctors, forever experimenting with the specific individual’s condition.
Our Health system is tied to our financial system. That is the root of it. So long as the doctors, hospitals, and researchers are tied to profit (our financial system) the necessary technology, research, and investment will not be found for those with rare diseases. I have a disease that has no cure. My immune system is attacking the tissue in my mouth. It is sorely painful, personally transformative, and damn if you could find a doctor who is a real expert in the field. Since it is rare, the institutions of the industry will not find proper medicine for its management, let alone its cure. I live with it, and the disease manages the way I eat, what I eat, how I clean my teeth, how I sleep, and interact with my partner too. This disease can transfer to another. Great eh!
For those of you who have or know of someone who has a rare disease, all I can say is to be patient. The present-day financial and healthcare systems need to change drastically, with governmental intervention in all aspects of research, planning, and manufacturing of medicines. Out of the hands who care for themselves, and hopefully into the hands of those who care about you and those you love.
Steven Kaszab
Bradford, Ontario
skaszab@yahoo.ca
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North Americans are aging, while the number of births within the tri-nation continent is continually falling. Birth Rates in the Caribbean have been stagnating since 2023 now showing a 7.5% decline. If national governments could dream this would be a nightmare. National union’s pension plans are at risk, as the number of workers declines but the number of pensioners continues to grow. No corporation can run properly in this fashion, much like the California Banks which recently were shut down because they spent more money than they made.
By 2046, 4.6 million Ontarians will be aged 85 and older. The province has fewer than 500 hospice beds and 4,000 hospital palliative care beds available. Ontario’s Healthcare Ministry and the many hospitals its controls are not prepared for the massive growth rate and demands of the aged. Like a car used a great deal, it breaks down. So to our aged population who do experience illness and disease. Ontario does not have enough nonprofit hospices, old age homes, long term care facilities now, and with the upswing of conservatism within Canada, the USA, and the Caribbean there will be a movement towards restraint at a time when necessary investments in these aged services and institutions present themselves. This seems to be typical for our present-day governmental administrations who lack an interest in long-term planning, with the needed revenue investments to be made for near future population demands. Migrants’ can be brought into our lands, but their training in the many fields required will certainly take a lot of time. The time our population does not have.
What is needed? With the present-day migration of nurses, medical professionals, and doctors moving from the Caribbean to the USA and Britain, the demand for trained professionals specializing in aged medicine, bereavement and grief training, hospice palliative care, Navcare to help clients find the services they need has increased at an urgent pace. Volunteers are being trained and relied upon to carry out the needed services that missing professionals should be doing. The management within many facilities has allowed friends and family to fill these positions. While community involvement is commendable, what are our taxes paying for here? Medical, hospital, and hospice centers are under the management and direction of the healthcare ministry, and these ministries are simply not doing the job they were assigned. Lack of funds, certainly lack of personnel, and lack of future financial gain have drained our healthcare ministries of their potential. Lives are at stake, and our politicians seem to be willing to fight the nurses, and healthcare professional union rather than carry out the needed governmental process. Stingy governments invest in the police, military, and economic growth of the state while their fellow citizens suffer and sometimes perish.
The healthcare systems respond by training people and sending them into areas within the system that will reduce emergency room visits, hoping to reduce hospital stays and make it possible for aging clients to stay in their homes. Such protocols are being carried out in Oxford(UK), British Columbia, and Scandinavia. Hospice technicians have been successful within their practicing regions, utilizing various professions in a team atmosphere. Many Traditional Medical Professionals within the hospital setting view these hospice professionals with prejudice and suspicion, creating further tensions within the healthcare system.
The Pandemic has shown us that our healthcare system was not prepared in any way to respond effectively, and the systems managers concentrated on revenue expenditures instead of being prepared for any eventuality. No plans on how to respond, no excess staff to rely upon. This health event has happened before, yet those we rely upon claimed innocence in their often failed reactions.
The aged within our area will also suffer a similar fate when our healthcare system and its managers fail to prepare, plan for, train, and hire needed staff. It is all about the money after all. Problem is that it is our taxes paying for these services, the managers and politicians to prepare and function for us, with us effectively. What do you do when you do not get the customer service you expect and are paying for? Is it time that our multi-system healthcare systems to be transformed?
Steven Kaszab
Bradford, Ontario
skaszab@yahoo.ca
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