When Patrick Sullivan, 59, was diagnosed with Parkinson鈥檚 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.
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鈥淭he 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 Qu茅becoise de voile adapt茅e].鈥�
AQVA鈥檚 stated mission is to enable even people with severe mobility impairments to enjoy community life through sailing.
鈥淥ne-stop shop鈥� at The Neuro
Patrick is grateful for the multidisciplinary care he found as a patient of The Neuro鈥檚 Movement Disorders Clinic, which he called a 鈥渙ne-stop shop鈥� for PD.
鈥淭hey have neurologists who are specialists in movement disorders, a physiotherapist, an occupational therapist, a social worker, a nutritionist. And I can鈥檛 say enough about the nurses; they鈥檙e always available, respond quickly, follow up, and facilitate access to the services. They鈥檙e pretty wonderful people!鈥�
Patrick is also pleased that the clinical team works in conjunction with Parkinson鈥檚 researchers like Dr. Edward Fon, a neurologist who is also The Neuro鈥檚 scientific director.
鈥淚鈥檝e participated in about five different clinic trials associated with The Neuro,鈥� says Patrick. 鈥淭he 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.鈥�
Treatment options
With the clinic鈥檚 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.
鈥淎fter long-time use, the pill鈥檚 effect was wearing off quickly. My neurologist, Dr. Anne-Louise Lafontaine, suggested that I try Duodopa庐.鈥�
Duodopa 庐 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.
鈥淚t doesn鈥檛 slow the disease or prevent dyskinesia but it鈥檚 a better delivery system, like ketchup is a better way to deliver salt.鈥�
Patrick is also one of about 25 patients at The Neuro who uses Duodopa庐, which has been available for several years.
New advances in Parkinson鈥檚 treatment
Patrick is among close to 2,000 PD patients receiving care and treatment at the clinic. This team鈥檚 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鈥檚 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.
鈥淲e give patients the choice,鈥� says Lachance. 鈥淎 majority of patients wants an in-person consultation, but the phone is very accessible. Here, a human answers and returns people鈥檚 calls.鈥�
Lately, the clinic has been delivering two other treatments for patients with advanced PD.
鈥淢ovapo庐 is administered by injections,鈥� explains Lucie Lachance, a nurse at the clinic. 鈥淚t 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庐.鈥�
Health Canada approved the second treatment, Kynmobi鈩�, last year.
鈥淚t鈥檚 an apomorphine film that patients place under their tongue when their regular therapy wears off and symptoms reappear. It鈥檚 an easy protocol. Patients don鈥檛 need to learn how to inject themselves in the arm as they do with Movapo庐. We have four patients on Kynmobi鈩�.鈥�
Kynmobi鈩� manufacturer, Sunovion Pharmaceuticals, is working to have the drug covered by Quebec鈥檚 public health plan, R
