Harry Forestell on his Deep Brain Stimulation surgery for Parkinson's

Harry Forestell is a journalist with CBC Television. In 2013, he noticed a tremor in his right hand and was unsure what it was. It was later determined to be Parkinson's disease. He was referred to Dr. Tony Lang and the team at Toronto Western Hospital, a movement disorder clinic. They confirmed the diagnosis and began treatment. The symptoms of the disease began to worsen, and he was frustrated by the amount of focus and attention it took to walk normally. 

His doctor suggested deep brain stimulation (DBS) as a potential treatment option. He was hesitant at first, but as the symptoms worsened, he decided to explore the option further. He spent a weekend in November going through a series of tasks to see if he would be a good candidate for DBS. He was delighted to pass and was excited about the prospect of another treatment option. He spent a month in Toronto having the procedure done and was impressed by how quickly and with little fuss the surgery was completed. 

He was back at work and was able to return to his regular social life and work obligations. The impact of the DBS was immediate and very pleasing. His tremors and shakes abated, and he didn't have to experience dyskinesia anymore. He was able to return to work and even appear on camera, which was a huge bonus for him.

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.

The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.

Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil

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Transcript

My name is Harry Forestell. I'm a journalist with CBC Television. I've been a reporter and producer and host about 35 years. It's part of my work. I'm on television a fair bit. It was about in 2013, the year my mother passed away that I began to notice a tremor in my right hand. I'm left handed, so it didn't bother me that much, but it was noticeable and it was something that I thought I'd have that checked out. So the next time I was at the doctor, I did. My doctor at the time was uncertain what it was, whether it was something called the central tremor, which I'd never heard of, but it sounded pretty benign, or whether it was something more serious like M.S., illness or Parkinson's. So that was a bit of a worry. It took over the next two years, beginning to confirm the diagnosis of Parkinson's. And then that time my neurologist in New Brunswick, had referred me to Dr. Tony Lang and the team at Toronto Western Hospital, a movement disorder clinic. And that was where in 2015 I really had my diagnosis confirmed as Parkinson's. My symptoms at the time were mostly the tremor, and I was shaking my leg on my left leg alone at work. Now, I was always a leg shaker as a means to the expanding access. And I guess when I was young, so that didn't really worry me, but it was noticeable that it was doing it when I wasn't really intending for it to happen. And then the thing that really sort of blew my mind and frustrated me was that I was finding it was taking more and more focus and attention just to walk normally. Now I live on a hill, quite a grade, and walking up the hill after dropping my daughter at school became a real task because I was so focused on swinging my arms in time to the movement of my legs. And I thought, this kid, this can't be right. This shouldn't take this much time and attention. I'm just walking. It's very simple. Why is it so hard? That was really beginning to annoy and disconcerted me. Well, the team return to action is very, very supportive, of course, and they were very thoughtful and concerned about not just for me as a patient, but about my career, what I did for a living, and knowing that I had to appear on television on a regular basis, knowing that I still had some career ahead of me. And I was only 53, 54 years old, and I still had career ahead of me to go.

And Dr. Lang said, “Don't worry, we'll get you back on the air. It'll be okay.” So he was very reassuring. Nonetheless, the symptoms continued to grow. And that was dispiriting.

However, I did notice that the use of drugs like levodopa especially was huge in terms of helping me deal with the symptoms that control them. But over time, as my volume of the levodopa increase, the side effects of that, especially dyskinesia, began to be more and more of a factor in my mental health and my physical health. I had heard sometime earlier that there was a thing called deep brain stimulation and I understood the broad principles of it, but I thought, well, that's, you know, brain surgery sounds pretty serious and it's nothing that I want to get into right now. And Dr. Lang, as we discussed it, don't think that, you know, we've got to see whether you would qualify for it or not. And as we got closer and closer and the symptoms closer and closer to the current time and as my symptoms grew more serious, it became more apparent to me that maybe DBS would be a, you know, a more appropriate solution, a longer-term solution and a more satisfactory solution. My DBS journey began with the trip to Toronto to see if I even qualified because of course, with deep brain stimulation. The issue is are you able to gain is much benefit from it as you are from the use of levodopa. So a good strong reaction to levodopa, positive reactions over levodopa is a good indication that deep brain stimulation, which really only modifies and addresses the mechanical issues of the body in the Parkinson's case that I was suited for that. Also, there is psychological and social what not measures, but tasks that had to be gone through. So I spent a weekend in November, 32 years ago, going through it to see if I would be a satisfactory candidate. And much to my pleasure and surprise, I pass, I guess, for want of a better phrase, and I was delighted with that. And has that prospect of another option rather than just continuing with the growing. We had talked about the use of an abdominal shunt to deliver levodopa directly to the digestive tract. I didn't like that,