Margot’s Story
Milford Sound, South Island, New Zealand
Twenty years ago, John Parkhurst and his wife, Margot Bartlett, moved to their cottage in Tiny, Ontario. That was six years after Margot, a former nurse, was first diagnosed with Parkinson’s disease. “My doctor says I am the poster child for Parkinson,” she says, with all the treatments, drug trials and medications her doctors tried. After 12 years, nothing seemed to work and then dyskinesia set in as the amounts of drugs increased. Not everyone will experience these effects from medication, nor to that extent.
Though Deep Brain Stimulation (DBS) surgery was fairly new at the time, they decided to go for it. What followed was months of preparation involving a number of appointments, tests and dialogues. In March 2006, Margot was awake through over 10 hours of surgery with Dr. Mojgan Hodaie at Toronto Western, and has never looked back. The results were far better than anyone expected, with less medication and no tremors, although there were problems with her knees jolting, causing much debate among the doctors.
After the surgery, John and Margot were able to travel extensively to Machu Picchu, Antarctica and Australia, spending winters in Florida.
Her active routine includes two rehabilitation sessions per week and a 4 km walk daily, even though her balance is deteriorating and she now uses a walker. Family and friends say she is doing remarkably well.
“Without the surgery, I would be in a nursing home and not enjoying the full and happy life I have today,” says Margot. “I hear John singing in the morning and even have my independence back, where John can go sailing and I can stay at home on my own. Or I stay with my daughter Lindsay in her new home nearby.”
Considering DBS? Margot suggests you ask a lot of questions about possible drawbacks and be patient – the tests take months and then a medical committee will decide whether or not you are a candidate, based on your medical history.
“Just go for it – what have you got to lose?”
About DBS
Deep brain stimulation (DBS) is a treatment that involves surgery. Special wires (electrodes) are placed in one of the movement control centres of your brain. The wires are connected to a device (pulse generator) that is placed in your chest, just under the skin. Once your wires are placed, you will need regular check-ups with your deep brain stimulation care team. From time to time your team may need to adjust the device as well as your Parkinson medications. The battery for the device needs to be replaced every 5 years or so.
Janice’s Story
Janice Horn is a sought-after artist and founder of SHAKE It Up! Creative Arts Group. It is here that she helps people living with Parkinson’s tap into their feelings and creative selves. The program enables people with Parkinson’s to practice coordination while being socially active.
She knows how to help – as an artist, and as a person with Parkinson’s, having been diagnosed 11 years ago. At that time, Janice developed dyskinesia, carpal tunnel syndrome, facial masking and depression. “I felt crazy,” she said, wanting to do something about it.
Janice spent the next 18 months talking with doctors about possible treatment options, including DBS. At first she was frightened at the mere thought of her head being drilled. Who wouldn’t be?
Then in November 2012, she was admitted to Winnipeg Health Science Centre, and her DBS surgery would last six hours, with surgeons operating on both sides of her brain. While she could hear the work being done on her skull, she was mildly sedated and came out feeling it was the easiest surgery she had ever had.
Janice was back on her feet, with a better life, in one week and now looks ‘normal’ to most people. She takes less medication, the dyskinesia has lessened, she experiences less rigidity and her movements are quicker. Without the surgery, Janice believes she would no longer be functional. Today, along with assisting others through art, she has become an ambassador for DBS and demonstrates how the battery and impulses work. This involves moments of surprise for the observer, who may not have expected the tremors to return so rapidly when the battery is shut off. Janice takes it all in stride. While she has gained some weight and has minor balance issues, she lives a more rewarding and healthier life now than the day she first heard the words, “You have Parkinson’s”.
Learn More About Advanced Therapies in Parkinson’s Disease
Want to find out more about advanced surgical therapies like Duodopa and DBS? On June 12th, Parkinson Canada hosted a webinar featuring international expert Dr. Alfonso Fasano. Dr. Fasano talked about the established surgical treatments for Parkinson’s disease, in particular, deep brain stimulation (DBS) and intestinal infusion of L-dopa/carbidopa. The inclusion criteria as well as techniques and outcomes were discussed, along with newer treatment options. This Parkinson Canada Education Event was sponsored by AbbVie.
Visit Parkinson Canada’s Knowledge Network to playback the June 12, 2018 recording. Also, visit Parkinson Canada’s Education Publications to download information sheets on Duodopa for both People with Parkinson’s and for Medical Professionals.
About Dr. Alfonso Fasano
Dr. Fasano graduated from the Catholic University of Rome, Italy, in 2002 and became a neurologist in 2007. In 2013 he joined the Movement Disorder Centre at Toronto Western Hospital, where he is the co-director of the surgical program for movement disorders. He is also an associate professor of medicine in the Division of Neurology at the University of Toronto and clinician investigator at the Krembil Research Institute. He is the author of more than 190 papers and book chapters. He is principal investigator of several clinical trials.
Training Health Professionals
Parkinson Canada offers health professionals continuing professional development opportunities to inform them on how to best treat and manage people with Parkinson’s. Earlier this month, we attended the Canadian Pharmacists Conference, and featured the Medications to Treat Parkinson’s Disease resource. Visit our website to download a PDF copy today, or contact info@parkinson.ca to request print copies.
Later in June, look for Parkinson Canada at the 49th Annual Canadian Association of Neuroscience Nurses (CANN) Conference in Halifax – June 24-27, 2018. Jennifer Doran, Nurse Specialist at The Neuro in Montreal, and Kristina Novosel, a clinical nurse working alongside Dr. Barbara Connolly, at the Hamilton General Hospital, will deliver a workshop on Advanced Parkinson Therapies. A handout developed for health professionals as well as people with Parkinson’s will serve as an awareness piece with some facts on Duodopa and how it works. The handout is intended to be a conversation starter.
Upcoming Events at Parkinson Canada
The Pedaling for Parkinson’s ride takes place in Parry Sound on July 13-15, 2018. Register, volunteer and donate online.
Mark your calendars for these upcoming webinars hosted by Parkinson Canada.