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.
Since my diagnosis, the most unsolicited advice I’ve received is about my diet. As a change of pace, I’m actually asking for advice today from Dr. Laurie Mischley, a naturopathic physician and nutritional neuro-epidemiologist. For the past seven years, she has been tracking 2,000 people with Parkinson’s to determine how foods, vitamins and minerals are impacting the rate of progression. In this episode of When Life Gives You Parkinson’s, Dr. Mischley comments on the positives and negatives of many diets that have been recommended to me, including keto, gluten-free, 7:1, and the 24 eggs a day diet.
Based on her research, Mischley finds the people with Parkinson’s that are doing the best over time post-diagnosis are eating fresh fruits and vegetables, non-fried fish, nuts, seeds, olive oil, coconut oil, wine, fresh herbs and spices. She notes that this closely resembles the Mediterranean diet.
As important as what to eat is what not to eat. Mischley has identified several foods associated with statistically significant, faster-than-average Parkinson’s progression, including dairy, beef, fried foods, soda, canned fruits, and canned vegetables.
Organic and local foods matter, too. In a true or false question in her study, people who said TRUE to the statement, “I try to eat organically grown foods when possible,” are doing significantly better than people who do not go out of their way to eat organic. The same thing is true for the statement, “I shop at local farmers markets, co-ops and try to eat locally and seasonally.”
It is because of research and people with Parkinson’s willing to participate in that research that there are best practices, better treatments and continuing hope for a biomarker and a cure.
“I think there are a lot of myths and misconceptions about clinical trials,” Dr. Soania Mathur, a family physician who has been living with Parkinson’s for 21 years and is speaking at WPC2019 about advocacy and research, says on When Life Gives You Parkinson’s.
“I think some of the barriers are probably logistical. It’s hard sometimes to fit into our schedules, especially when you have young onset and you maybe work or are raising a young family. Some of the clinical trials can be quite involved in terms of time. Some of it is that people just don’t know how to find trials they would qualify for and be in their geographical area.”
During our discussion, Dr. Mathur also outlined some key misconceptions. She notes that some people like the idea of clinical trials, but are fearful that they will lose their current medical care. Others fear they will be subjected to tests that will be painful or inconvenient. And some are concerned that they are being used as a guinea pig for potentially dangerous medication or treatment plans.
The reality is that while there are invasive clinical trials, there are also observational clinical trials where you fill out questionnaires, genetic clinical trials where you simply provide a spit sample, and a lot of trials where you have to go in one time and you’re not subjected to long followup. Without all of these types of clinical trials the science cannot progress, our understanding of the disease won’t progress, and, certainly, the development of new treatments won’t occur.
Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the 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. This episode, Heron teaches us the phrase Toire wa doko desu ka? which translates to “Where is the washroom?”
When you enter a Japanese washroom, Heron cautions that there are three types of toilets you may encounter. There is a traditional Japanese toilet. This toilet features a long porcelain trough that you squat over. You’re likely to only encounter this in the countryside and not in the cities. You might encounter a traditional western toilet. This a toilet much like we have here in North America. One difference is that when you flush, water comes out of a fountain for hand washing before being used to flush any liquids or solids. And then there is a modern or “space age” toilet. These toilets can feature lights, a seat warmer and many options for spray cleaning and drying. Heron notes there is no need to be intimidated because there are pictures clearly identifying where water will be sprayed depending on your needs and that it is quite pleasant and hygienic.
For more info on the World Parkinson Congress head to www.WPC2019.org
Facebook: Facebook.com/WorldPDCongress/
Twitter: @WorldPDCongress
YouTube: WorldPDcongress
Instagram: @worldpdcongress
Thank you to:
Soania Mathur, MD and author of Shaky Hands: A Kids Guide to Parkinson’s Disease,My GrandPa’s Shaky Handsand the blog, “Designing a Cure; Living Well with Parkinson’s Disease.” Follow Soania on Twitter: @SoaniaMathur
Laurie Meschley, ND, MPH, PhD(c). You can follow Laurie’s research on her website “Education is Medicine” on her Facebook pageand on Twitter: @NatNeuro
James Heron, executive director of Japanese Canadian Cultural Centre
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018.
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