Over time, as Parkinson’s disease progresses, symptoms become more complex and have a greater impact in one’s daily life. In addition to possible cognitive changes, medications to manage motor symptoms are no longer adequately effective and their side effects may outweigh the benefits. Controlling movement becomes more challenging, and assistance is needed with daily activities such as dressing, personal hygiene and at mealtime. Current therapies for advanced Parkinson’s include Deep Brain Stimulation (DBS), the Duodopa gel infusion pump, and VYALEV subcutaneous infusion therapy. Also, studies are currently being conducted on Focused Ultrasound (FUS). 

We invite you to join our webinar on Wednesday, December 11 from 2:00 to 3:15 PM Eastern Time as we discuss these four therapies, and hear from individuals living with Parkinson’s who have accessed these therapies: honest and unfiltered conversations about their decisions to access the therapies, the screening processes, what their surgeries and/or daily procedures are like, and what impacts – both positive and negative – they’ve noticed since then

Presenters

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  Adele Gould

  Born and raised in South Africa, Adele emigrated to the US with her husband and three children, where they then welcomed twins. Settling in Toronto, she obtained her Master of Social Work degree, and then worked counseling people who were battling chronic illness. Adele was diagnosed with Parkinson’s 21 years ago and went on disability at the age of 60. In November 2023 she underwent Deep Brain Stimulation (DBS) surgery at Toronto Western Hospital. With a passion for creative writing, she has had several essays published in newspapers, magazines and online, and is currently in the process of self-publishing a book of her essays, “Parkinson’s … You Too Huh?” She spends her time writing, enjoying other hobbies and spending time with her second husband and their large combined families.

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  Gary Brown

  Gary Brown was diagnosed with Parkinson’s 10 years ago at age 49. A fit marathon runner, he was able to ignore the tremors and carry on with life, family and work. In January 2014 his symptoms worsened and new ones appeared. A neurologist told him, “I’m pretty sure you have Parkinson’s.” On a return visit three months later - and 2 weeks after running the Chicago Marathon – his diagnosis was official. Within a couple of years Gary was taking 17 Levodopa pills a day, yet his tremors were not still under control. After hearing about a procedure called Deep Brain Stimulation, he began some research. On February 14, 2019 Gary had DBS surgery, quipping he’d do anything to get out of Valentine’s Day. After maneuvering the pandemic and some initial programming difficulties, he now enjoys a very busy, active life again. While he knows he’s not cured, he considers DBS a bigger band aid. He still has tough days with fatigue and slowness, however he feels blessed and grateful for all his doctors, family and friends. 

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  David and Margaret S

  David S. was a Red Seal Chef for about 30 years, retiring earlier than expected due to Young Onset Parkinson’s. The symptoms appeared singly and then fairly rapidly began appearing in clusters, resulting in a formal Parkinson’s diagnosis in 2011. At that time, David began a course of oral medications. After 12 years they were no longer effective and symptoms were more debilitating, necessitating the use of a walker. His doctor at the Movement Disorders Clinic suggested the Duodopa intestinal infusion pump for managing his symptoms. After some initial hesitation and nervousness about the procedure, he recognized the potential benefits and the need to approach it with an open mind. David underwent the surgery in December 2023 and since then, the Duodopa system continues to be an effective means of controlling the worst of his symptoms, allowing him to do some of the activities he hasn’t been able to do for a very long time such as going for walks and shopping with his wife Margaret, and even being able to concentrate enough to enjoy reading a good book.

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  Shane McPhee

  Diagnosed with Parkinson’s disease in the Fall of 2011, Shane McPhee worked closely with his Movement Disorder Specialist and followed the standard route for treating his Parkinson’s by attempting to ‘live well with PD’, which included a prescribed number of oral Parkinson’s medications. In June of 2021, having reached a daily total of 21 PD-related medications, he began to experience adverse reactions to any attempts to increase the dosage or frequency of his oral meds. Having investigated a couple alternative means to treat the increased intensity and frequency of his symptoms, Shane was notified that he met the eligibility criteria and subsequently chose Duodopa Therapy - a gel administering by pump -as his preferred method of treating my Parkinson’s. Since August of 2021, he has been using Duodopa to treat the relentless, progressive pace of his Parkinson’s. 

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  Ken Jenkins

  Ken Jenkins is a retired physician living in Newfoundland. His medical career of 36 years included 20 years with the Canadian Forces and 12 years as a Senior Executive with a Regional Health Authority in NL. In the latter part of his career, Ken co-founded a private health services company working in various industrial sectors. Ken was diagnosed with Parkinson’s in Dec 2016. His primary therapies have included levodopa & carbidopa, pramipexole, and entacapone. Starting in 2023, Ken developed a medication induced psychosis. His symptoms included paranoia, delusions, and hallucinations. Ken required urgent mental health inpatient intervention, which included a rapid elimination of two drugs. Ken’s mental health symptoms resolved after several months but he developed frequent freezing episodes that impacted the majority of his day. With the help of his healthcare team, Ken started Vyalev therapy in June 2024. Since then, his mobility has greatly improved with fewer freezing episodes, allowing him and his wife to enjoy their retirement goals. 

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  Laurine Fillo

  Laurine Fillo is a Calgary-based photographer and was diagnosed with Young-Onset Parkinson’s disease over 20 years ago. She cofounded Pedal for Parkinson’s Research and with her devoted team, raised over $400,000 for research and hosted successful Parkinson’s research symposiums. In her present role as a Provincial Representative with the Canadian Open Parkinson Network (C-OPN), she contributes a lived experience perspective and continues her advocacy work. For the past 5 years, she has been a clinical trial participant, wearing the Vyalev infusion pump to deliver levodopa subcutaneously for Parkinson’s symptom control. 

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  David Lipson

  David Lipson graduated from Western University Faculty of Law in 1976 and practiced law in London, ON. In 2000 Dave ran the Chicago Marathon at the age of 48. Four years later, his wife and running partner, Brenda, noticed that Dave’s runs were getting slower – rather than progressively quicker as they had been – and he had no arm swing on one side. Later in 2004, he was diagnosed with Parkinson’s and began taking levodopa, eventually transitioned to walking marathons. DBS surgery in 2011 gave Dave a reprieve from many of the motor symptoms for a number of years, but by 2023 other symptoms emerged that were impacting his ability to move safely and independently and he had to stop running. After hearing about Vyalev and consulting with his Movement Disorder Specialist, Dave began Vyalev infusion therapy in April 2024, and is once again enjoying independence almost all of the time…even traveling again – an activity that not long ago, he and Brenda had thought was no longer possible.

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  Andrew Hill

  Andrew Hill, 67, is a retiree living just north of Toronto with his wife of 43 years. He was diagnosed with Parkinson’s in 2020. In 2020, he was diagnosed with Parkinson’s disease—a diagnosis that initially came as a shock. Now, four years later, Andrew feels that he’s managing relatively well. 

  Andrew believes that having Parkinson’s motivates him to work on management of his Parkinson’s symptoms – he describes it as his new job in retirement – and to be involved in Parkinson’s research. Focused ultrasound (FUS) research particularly caught his interest because it aims to address the root cause and progression of Parkinson’s, rather than just treating the symptoms. Andrew is currently involved in his third FUS study trial at Sunnybrook Hospital in Toronto. 

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