In June, I will be travelling to Kyoto, Japan, for the fifth World Parkinson Congress (WPC). WPC is a global Parkinson’s event that opens its doors to all members of the Parkinson’s community, from neurologists and researchers to those living with the disease. Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC 2019.
One of the exciting areas of research, as it pertains to understanding Parkinson’s disease, is in genetics.
Dr. Matt Farrer is a geneticist at the Djavad Mowafaghian Centre for Brain Health. In 2004, he found the first genetic connection to Parkinson’s, LRRK2, and his team has since identified about a dozen others.
Farrer is the first to admit Parkinson’s is not a genetic condition, but as with everything biological, there is a genetic component.
“The genetic component in Parkinson’s is 27 per cent,” Farrer said. “That’s the variability in the condition that can be attributed to a genetic cause.”
He explains that most people don’t have a clear-cut passing of inheritance down the family line from their parents to them, for example. It does happen sometimes, but those families are pretty rare.
Farrer is looking for unequivocal answers. He wants to know what the issue is from a molecular point of view, down to a single protein. Once that is determined, Farrer and his team work backwards to find out what that protein is doing in a cell, what that cell is doing in a brain and how the mutation discovered leads to disease.
“The whole goal is to predict and prevent,” Farrer says when asked about the chances of a cure. “Cure is a difficult term. I would like to prevent symptoms from progressing. I would like to slow down or halt the disease in people who already have a diagnosis. I would like to prevent it in subjects who may be destined, for example, because of their genetics.”
In Kyoto, Farrer will be discussing new insights into the function of LRRK2 from a genetic point of view. The information may be a bit heady for folks who aren’t researchers, but if you’re interested, Farrer encourages you not to be intimidated by esoteric terms he may use.
“Everyone’s coming to Kyoto anyway; it is a strange place for many but it’s a wonderful place. Get immersed in it,” Farrer says.
There are quite a few shout-outs to how beautiful Kyoto is. Here is a list of attractions that are listed by level of accessibility, which will help you plan which sites might be the best fit for your ability to get around the city.
Last year, a magazine called Fokus — which is like Sweden’s version of Time magazine — announced that its 2018 Swede of the Year in medicine was Sara Riggare. She was diagnosed with Parkinson’s in 2003, 18 years after her first symptoms appeared.
Riggare, co-chair of the Patients Advocate Committee for WPC2019, is a self-described Parkinson’s “im”-patient. A chemical engineer by trade, she returned to school and is a PhD candidate researching digital self-care for Parkinson’s patients. Riggare is a proponent of making use of the possibilities of technology and the internet to benefit individuals with Parkinson’s and empower them with knowledge.
“From doing that, I learned to observe my body more consciously and I think I’m more attuned to how my body works and how the medication affects it,” Riggare says.
In each episode of the WPC2019 podcast, I’m going to check in with James Heron, executive director of the Japanese Canadian Cultural Centre, to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts.
When you are sitting down to eat or just before you eat, Heron explains that Japanese people will say, “itadakimasu,” which is comparable to “let’s eat” or “bon appétit.” When it comes to chopsticks, Heron suggests you practice before arriving, but if you are having troubles, it is perfectly acceptable to ask for a spoon or a fork.
“The important thing with chopsticks is not to stick them upright in your rice. That is something that is actually part of the funeral ritual,” Heron cautions.
Also, you should never pass food with your chopsticks and only use the ends of chopsticks that are not going in your mouth to take food off a shared plate.
Heron also shared some notes regarding specific foods. When eating noodles, he says, it is OK to slurp. Sushi can be eaten with chopsticks but is often a hand food. He says the Japanese do not pour soy sauce over anything, and they only dip the fish side of the sushi into it, never the rice.
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
For more information on the World Parkinson Congress, head to www.WPC2019.org.
Facebook: Facebook.com/WorldPDCongress/
Twitter: @WorldPDCongress
YouTube: WorldPDcongress
Instagram: @worldpdcongress
Thank you to:
Dr. Matt Farrer, geneticist at Djavad Mowafaghian Centre for Brain Health
Sara Riggare, co-chair of the Patients Advocate Committee for WPC2019. She’s blogging here.
James Heron, executive director of the Japanese Canadian Cultural Centre
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
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