When Patrick Sullivan, 59, was diagnosed with Parkinson’s disease (PD) ten years ago, he was left searching for physiotherapy, blood tests and medical imaging. After finding treatment at The Neuro, he is getting on with his life, staying active despite considerable difficulty walking.
He has joined PD Pro, a support group created and hosted by clinical nurse Lucie Lachance and social worker Pascal Girard. A third co-founder, clinical nurse Jennifer Doran, has since left The Neuro and been replaced as a host by Susana Morales. PD Pro brings older, early-onset PD patients together to chat, paint, do yoga, tango, and other activities.
Patrick also joined the Point Claire Canoe and Kayak Club, where he uses an outrigger canoe that is more stable than regular canoes and kayaks.
“The club is very accommodating. If needed, staff are there to help me put the outrigger in the water and take it out. I also want to get involved in AQVA [Association Québecoise de voile adaptée].”
AQVA’s stated mission is to enable even people with severe mobility impairments to enjoy community life through sailing.
“One-stop shop” at The Neuro
Patrick is grateful for the multidisciplinary care he found as a patient of The Neuro’s Movement Disorders Clinic, which he called a “one-stop shop” for PD.
“They have neurologists who are specialists in movement disorders, a physiotherapist, an occupational therapist, a social worker, a nutritionist. And I can’t say enough about the nurses; they’re always available, respond quickly, follow up, and facilitate access to the services. They’re pretty wonderful people!”
Patrick is also pleased that the clinical team works in conjunction with Parkinson’s researchers like Dr. Edward Fon, a neurologist who is also The Neuro’s scientific director.
“I’ve participated in about five different clinic trials associated with The Neuro,” says Patrick. “The first one was a study of the effect of physical exercise on PD. Another trial studied whether or not a new medication could alter PD progression. A current study is investigating how tracking eye movements might be used to detect PD onset, for which there is still no clear method.”
Treatment options
With the clinic’s help, Patrick has navigated the treatment options available. For several years, he was taking tablets to deliver levodopa/carbidopa to brain areas that were lacking dopamine, which is thought to be a principal cause of PD.
“After long-time use, the pill’s effect was wearing off quickly. My neurologist, Dr. Anne-Louise Lafontaine, suggested that I try Duodopa®.”
Duodopa ® is a levodopa/carbidopa gel delivered to the small intestine by a permanent tube linked to a pump that the patient wears. The tube passes through the abdominal wall and the stomach. The pump delivers a constant amount of L-dopa, which helps to reduce fluctuations and unpredictable off-times.
“It doesn’t slow the disease or prevent dyskinesia but it’s a better delivery system, like ketchup is a better way to deliver salt.”
Patrick is also one of about 25 patients at The Neuro who uses Duodopa®, which has been available for several years.
New advances in Parkinson’s treatment
Patrick is among close to 2,000 PD patients receiving care and treatment at the clinic. This team’s exemplary work led the Parkinson Foundation in the U.S. to name it one of its Centres of Excellence. In further recognition of The Neuro’s central role in PD, both the FRQS Quebec Parkinson Network (QPN) and the Canadian Open Parkinson Network (C-OPN) in Quebec have their headquarters here.
During the COVID-19 pandemic, the clinic continues to see patients both in person and on the telephone, and PD Pro gatherings are being held virtually on Team.
“We give patients the choice,” says Lachance. “A majority of patients wants an in-person consultation, but the phone is very accessible. Here, a human answers and returns people’s calls.”
Lately, the clinic has been delivering two other treatments for patients with advanced PD.
“Movapo® is administered by injections,” explains Lucie Lachance, a nurse at the clinic. “It can help stop fluctuations or involuntary movements within seven to 15 minutes, whereas oral medication in cases where the disease has progressed can take 30 minutes. We have 20 patients using Movapo®.”
Health Canada approved the second treatment, Kynmobi™, last year.
“It’s an apomorphine film that patients place under their tongue when their regular therapy wears off and symptoms reappear. It’s an easy protocol. Patients don’t need to learn how to inject themselves in the arm as they do with Movapo®. We have four patients on Kynmobi™.”
Kynmobi™ manufacturer, Sunovion Pharmaceuticals, is working to have the drug covered by Quebec’s public health plan, R
