Sadia Bacchus and her husband Manzil have been married for 43 years, meeting shortly after his migration from Guyana to Canada. On that 43-year journey, they have raised a growing family together and have celebrated many joys while overcoming challenges. Adjusting to Manzil’s diagnosis of Parkinson’s was one such challenge. This past fall, preparing for deep brain stimulation (DBS) together presented another.
“I felt so nervous” Sadia recalls of the uncertainty of her husband undergoing a complex, invasive brain surgery. So, she reached out to Parkinson Canada for help. While receiving a copy of Parkinson Canada’s Care Partnering, Managing Parkinson’s Disease Together manual and connecting with the information and referral team to answer specific questions about the procedure did not remove the concern, they did help to prepare them for the procedure together and left Sadia feeling well-supported. Those conversations also produced a connection for Manzil – someone who had been through the procedure and could share their experience.
Manzil started levodopa with 2 to 3 pills per day more than 12 years ago. By , he was taking 10 pills per day to help manage his symptoms. He was finding that even with this regimen of medications in the later years, it was not helping manage his symptoms effectively. Manzil would often ask his neurologist, Dr. Antonio Strafella, about the different research that was going on with Parkinson’s and if there were other treatment options. In a recent conversation, he learned of DBS.
DBS is a surgical procedure that acts as a “brain pacemaker.” Electrodes are positioned on certain Parkinson-related brain areas and connected to a batter-operated device called a neurostimulator (placed under the collarbone). Through the electrodes, the neurostimulator sends electrical signals to the brain areas to help relieve some of the motor symptoms of Parkinson’s. Approximately 160,000 patients have received DBS implants worldwide for various conditions and it is the most performed surgical procedure for Parkinson’s.
“DBS sounded like it was something that would give me a better quality of life” said Manzil. Manzil had to undergo various assessments – from psychological to a medication challenge to qualify for the surgery. The surgery itself required him to be awake while his neurosurgeon, Dr. Suneil Kalia placed the electrodes in the appropriate regions of the brain. With the procedure being performed in a state of near-lockdown in Ontario, visitors were severely restricted which left Sadia and her family waiting anxiously nearby for updates and hoping for a chance to visit.
After the two surgeries were complete over a three-day period (one to implant the electrodes and another to place wiring and connection along with installing a battery pack in his chest), Manzil was sent home and went back to his normal routine of Parkinson medications. He returned in mid-February to “turn on the battery pack” so that it would begin to send the signals to the brain. After some fine tuning over a five week period, Manzil has been able to reduce his pills to only two a day and his symptoms of Parkinson’s are significantly improved.
“DBS changed Manzil’s life. Before DBS, he avoided social gathering as he became too conscious of his Parkinson’s symptoms, and his dyskinesia and did not want anyone else to see him that way. DBS has changed that,” Sadia shares on what she views as a life-changing intervention. “Thanks to deep brain stimulation, I got my husband back and our children have their father again.”
Twenty years ago, Dr. Andres Lozano had a bold, but risky idea — he wanted to implant electrodes in the brains of people with Parkinson’s disease and then stimulate those electrodes to treat debilitating motor symptoms. The University of Toronto neuroscientist attracted a pilot project grant from Parkinson Canada to launch the world’s first DBS trial involving just seven patients. Today, DBS is widely recognized as a viable treatment option for some people living with Parkinson’s.
Supporting research that leads to breakthroughs like this, and providing support for people living with Parkinson’s and their care partners at critical points along the Parkinson’s journey, are important to the entire Bacchus family. That’s why they’ve been walking in Parkinson Canada SuperWalk since , and will be back again this year.
