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Living well with Parkinson's: Low-protein meals could be key ingredient in managing disease

Parkinson’s disease often brings to mind onscreen time traveller Michael J. Fox or legendary boxer Muhammad Ali and their public struggles with the debilitating movement disorder. But Dr. Galit Kleiner-Fisman, medical director at the Jeff and Diane Ross Movement Disorders Clinic at Baycrest Hospital's Assistive Technology Clinic, is out to make tapioca starch and gluten-free rice flour new household names Canadians living with the disease.
The movement disorders neurologist is hoping a set of low-protein recipes offered up via her new educational portal Live Well with Parkinson's Inc., a collaboration with the clinic and George Brown College, will introduce a touch of gastronomy into the lives of those living with PD. 
"Diet is very important in Parkinson's disease because the main medication called Levodopa may interact with protein," says Kleiner-Fisman pointing out that in some people high protein may numb the effectiveness of the medication. "Food is a really important part of people’s social lives. If you now have this wacky diet, it makes it hard to enjoy food. A lot of people become quite isolated."
The soon-to-be-launched portal, a multidisciplinary collaboration with design, culinary and computer students, has come a long way from the project’s "amateurish and somewhat naïve" beginnings.  

Like many great success stories, LWWP was born out of Kleiner-Fisman's frustration over the lack of practical knowledge available for people living with the disease. Parkinson's is a progressive neurological disorder caused in part by the degeneration of dopamine producing cells that affects more than 100,000 Canadians. As movement is partially controlled by dopamine, a chemical that carries signals between the nerves in the brain, when dopamine-producing cells die, the symptoms of Parkinson’s appear. 
"I kept seeing people who came from doctors that didn’t tell them anything and they had all kinds of wrong understandings of their condition," says Kleiner-Fisman, who has been working with the disorder for more than a decade. 
While searching the Internet for reliable information, she found multiple myths that discouraged people from seeking treatment. One of these was to hold off on taking medication for as long as possible--a troubling strategy that actually robs people of living with good symptom control.
Sitting in as the expert for an "Ask the Doctor" session for Parkinson’s patients was the final straw and Kleiner-Fisman decided it was time to take a new approach.
"I was blown away by the questions I was being asked because it was clear the people didn’t even have basic knowledge," says the specialist. 
She began conceptualizing an educational webinar, which eventually evolved into a web portal with information for Parkinson's patients on the subtleties of the condition and how to manage symptoms such as body tremors, stiffness, slow movement and balance problems, as well as other non-movement symptoms.

"It’s a very complex condition and can affect every aspect of your body and mind," says Kleiner-Fisman. "It’s a progressive disorder with no cure, but if you [understand it] you can live relatively well."
Which is why the specialist decided to make the betterment of daily routine the epicenter of LWWP. It wasn’t long before Kleiner-Fisman and team were pointed in the direction of George Brown, which often collaborates on projects such as this with help from government funding agents such as the NSERC College and Community Innovation Program. The project received additional support from Teva Canada, Novartis Canada, and the Ministry of Health and Long-Term Care (specifically, the AFP Innovation Fund).

It was also around this time that LWWP began to focus on the unique dietary requirements of Parkinson’s patients.
"You already have enough problems with Parkinson’s without having to have this sort of complicated diet regiment," Kleiner-Fisman says. 
Instructors at George Brown decided they would collaborate in a cross-disciplinary capacity. Students from the Food Innovation and Research Studio would develop a series of recipes geared towards patients' dietary restrictions. The School of Computer Technology would tackle the web portal, generating educational videos, a meal/medication scheduler, and developing a database to house the recipes. The short animated videos were created with the help of students from the School of Design.
"I think a lot of people don’t actually realize what low protein is," says Moira Cockburn, a research food scientist at the Food Innovation and Research Studio and one of the principal investigators behind the recipe side of the collaboration. She says that most meals only allow for two-to-three grams of protein, which is, essentially, a slice of white bread. Dinnertime has a little more wiggle room and can be anywhere from 30-40 grams, equivalent to a four-ounce portion of chicken breast.
"It was challenging," says Cockburn. "The goal was to generate recipes that were simple to make, healthy and, most importantly, taste good."
The students used nutritional software analyzing nutrients to find substitutions, crafting recipes that used gluten-free flower and tapioca starch as opposed to higher protein and more common ingredients such as wheat flour and cornstarch.  

In total, the students developed 14 recipes: three for each major meal and five snacks. There’s the ginger and vegetable stir-fry chock full of veggies and rice noodles, but only three grams of protein. Or the hearty roasted breakfast potatoes with tomatoes salad also falling within the low-protein requirements. For heavier protein meals, the students came up with a southwestern-style chicken and quinoa dinner and some delicious salmon fishcakes. They also included a list of necessary equipment to make the meals and made sure the ingredients were easy to find in the average grocery store. 
"We even did a trial run," says Cockburn, noting that they had people with the disorder come in for a taste test and then sent kits home with them to get feedback on the ease of making the recipes.
"We’ve done other projects with the health care sector but this was new for us,” she adds. 
While the culinary students toiled over the low-protein concoctions, the School of Computer Technology was building the website infrastructure.
"Galit came to us with a high concept idea," says Tyler Krimmel, an instructor with the School of Computer Technology. "She knew what she wanted, but wasn’t sure how to do it." 
Students took the concept and turned it into a fully functioning portal. Krimmel says the biggest takeaway for both him and the students is the role of applied research in gaining real world experience. "As educators, sometimes courses are taught and trained within silos, but those silos really breakdown when you’re in the real world."
The collaboration, which began in October, is coming to a close, but Kleiner-Fisman doesn’t see this as the end of the partnership with George Brown.
"We’re hoping to eventually develop a smartphone app," says the movement disorder’s specialist. "There are going to be many spin off projects as well."
As for the recipes, with the outpouring of support the project has yielded, Kleiner-Fisman hopes to continue to grow the database. 
Anyone interested in the project is encouraged to contact the Jeff and Diane Ross Movement Disorders Clinic until the portal launches in the spring. 

Andrew Seale is a Toronto-based freelance writer whose writing has appeared in The Toronto Star, the Vancouver Sun, The Calgary Herald, and Alternatives Journal among other places. He loves Toronto, but doesn’t like to sit still for too long and publishes stories of his adventures at whenwedrift.tumblr.com. Find him on Twitter @WhenWeDrift.
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