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.
Skinstitut Holiday Gift Kits take the stress out of gifting
Toronto, October 31, 2024 – Beauty gifts are at the top of holiday wish lists this year, and Laser Clinics Canada, a leader in advanced beauty treatments and skincare, is taking the pressure out of seasonal shopping. Today, Laser Clincs Canada announces the arrival of its 2024 Holiday Gift Kits, courtesy of Skinstitut, the exclusive skincare line of Laser Clinics Group.
In time for the busy shopping season, the limited-edition Holiday Gifts Kits are available in Laser Clinics locations in the GTA and Ottawa. Clinics are conveniently located in popular shopping centers, including Hillcrest Mall, Square One, CF Sherway Gardens, Scarborough Town Centre, Rideau Centre, Union Station and CF Markville. These limited-edition Kits are available on a first come, first served basis.
“These kits combine our best-selling products, bundled to address the most relevant skin concerns we’re seeing among our clients,” says Christina Ho, Senior Brand & LAM Manager at Laser Clinics Canada. “With several price points available, the kits offer excellent value and suit a variety of gift-giving needs, from those new to cosmeceuticals to those looking to level up their skincare routine. What’s more, these kits are priced with a savings of up to 33 per cent so gift givers can save during the holiday season.
There are two kits to select from, each designed to address key skin concerns and each with a unique theme — Brightening Basics and Hydration Heroes.
Brightening Basics is a mix of everyday essentials for glowing skin for all skin types. The bundle comes in a sleek pink, reusable case and includes three full-sized products: 200ml gentle cleanser, 50ml Moisture Defence (normal skin) and 30ml1% Hyaluronic Complex Serum. The Brightening Basics kit is available at $129, a saving of 33 per cent.
Hydration Heroes is a mix of hydration essentials and active heroes that cater to a wide variety of clients. A perfect stocking stuffer, this bundle includes four deluxe products: Moisture 15 15 ml Defence for normal skin, 10 ml 1% Hyaluronic Complex Serum, 10 ml Retinol Serum and 50 ml Expert Squalane Cleansing Oil. The kit retails at $59.
In addition to the 2024 Holiday Gifts Kits, gift givers can easily add a Laser Clinic Canada gift card to the mix. Offering flexibility, recipients can choose from a wide range of treatments offered by Laser Clinics Canada, or they can expand their collection of exclusive Skinstitut products.
Brightening Basics 2024 Holiday Gift Kit by Skinstitut, available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.
Hydration Heroes 2024 Holiday Gift Kit by Skinstitut – available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.
LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?
It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.
Here’s how you can prepare your digital life for your survivors:
Apple
The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.
For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.
You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.
Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.
Google
Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.
When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.
You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.
There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.
Facebook and Instagram
Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.
When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.
The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.
You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.
TikTok
The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.
Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.
X
It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.
Passwords
Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?
Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.
But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.
___
Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.
The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.
New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.
The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.
Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.
Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.
“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.
“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”
McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.
But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.
The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.
He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.
“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.
“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.
McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”
McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.
He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.
“Early identification of reading difficulty can truly change the trajectory of a child’s life.”
This report by The Canadian Press was first published Oct. 23, 2024.
