News From the Front: Key Takeaways from the World Parkinson’s Congress, Part I (Diet, Exercise & Supplements)

The World Parkinson’s Congress brings together Parkinson’s patients, caregivers, clinicians, researchers and advocates  from all over the world every three years to update the community on the latest developments in research and living well with the disease and to inspire us all to keep fighting. The Fourth WPC was held in Portland, Oregon on  September 21 – 23, with over 4,500 in attendance. It was the first WPC for Ellie, me and our friend and fellow PD Gladiator Dave Jones, and we left inspired by the brilliance and prolificness of the researchers and the heart of our fellow PwPs and care partners. I’m not a doctor–and I found much of the technical reporting on research for a cure overwhelming–but over the next couple of weeks I’m going to post about my impressions and key takeaways from the presentations and exhibits I attended at the WPC, which were only a fraction of the lectures and workshops offered. Please use them to inform your own further research and questions for your doctors. If you also attended the WPC, please add your takeaways from the Congress in the comment section below.

The three days at the WPC were organized in the same way: Hot Topics and Plenary Sessions in the morning and then Parallel Sessions, Workshops and Roundtables in the afternoon. While I was encouraged by the developments in research for a cure, I found myself drawn to sessions and activities that offer PwPs opportunities to take more control over our disease progression now. My key takeaways from the Congress (gleaned from lectures, roundtables, posters, and conversations with other PwPs) are (a) the more we exercise and move in our daily lives–every day and in challenging, new and fun ways–the better we will live with PD over a longer period of time, (b) the effects of nutrition are understudied–eating right can have a dramatic impact on our well-being, (c) sleep is important for cleaning bad stuff (the technical term the presenter used was “crud”) out of our brain cells, and (d) support is critical for emotional well-being, encouragement to do the things that we don’t want to do that are good for us, and information sharing.

Today I want to focus on the item that stuck with me the most:

Diet, Exercise, and Supplements: What Can We Learn From Outliers?

Information about the effect of nutrition on PD is hard to come by because few clinicians specialize in it and funding for research is sparse because Big Pharma can’t make any money by teaching PwPs to eat right. This WPC had a lecture and a roundtable session devoted to nutrition, which our roundtable leader, Dr. Laurie Mischley, PhD, said was the first time so much attention was given to nutrition at a major Parkinson’s event.

Dr. Mischley was excited to share the results of her ongoing study on PwP outliers, which I have been participating in for a couple of years (1,024 PwPs are enrolled). Rather than study a particular aspect of PD, she has been surveying PwPs about both their symptoms and every aspect of their treatment, including drug regimen and complementary and alternative medicine therapies, then statistically measuring which treatments correlate to slower progression of symptoms. Dr. Mischley also sees PwPs in a clinical setting and, coincidentally, one of our PD Gladiators, Chuck Nolan, had a telephone appointment with her this week. Chuck and I have compared notes, and the following report and impressions are the result of our collaboration.

propd_0002

Click Graphic To Enlarge In New Tab

The graphic to the left (which can be enlarged in a new window or tab by clicking it) shows the preliminary results of Dr. Mischley’s study, “The Roles of Diet, Exercise & Supplements in Parkinson’s Disease Progression.” She designed an assessment tool, the Patient-Reported Outcomes in PD (PRO-PD) scale, which assesses PD severity and was validated against the existing measures of PD severity, then used statistical analysis to determine which factors had significant positive or negative effects on PRO-PD scores.

♦ 30 minutes of daily exercise had the greatest positive impact by far (with the best results seen by those exercising 7 days per week).

♦ Oral glutathione supplements had the next greatest impact (although Dr. Mischley recommends intranasal glutathione spray if you can afford it–about $400/month, by prescription but generally not covered by insurance).

♦ Rasagiline (Azilect) had the next greatest impact on PRO-PD scores, indicating a neuroprotective effect in real life despite failed Phase III clinical trials (in what Dr. Mischley refers to as an “artificial environment).

♦ Coenzyme Q10 had a significant positive impact, again despite failed Phase III clinical trials. Dr. Mischley said that this was one instance where “you get what you pay for,” with better results seen from the more expensive forms of CoQ10. She recommends Integrative Therapeutics wafers as a supplement, 100mg/day (or 300mg/day if you are taking a statin). At WPC, Dr. Mischley recommended a SpectraCell Laboratories micronutrient test, $390 online, to test for a deficiency; she suggested a “PD Panel” blood test and a hair test to Chuck on their call.

♦ Iron and melatonin were associated with worse outcomes; however, Dr. Mischley recommended melatonin to Chuck to help with sleep problems. We think this is because she believes the negative impact of melatonin reflects heavy use of the supplement by poor sleepers and not an inherent problem with melatonin itself.

♦ Foods correlating to a significant positive impact on PRO-PD scores were, in order of highest to lowest impact, fresh fruit, fresh vegetables, nuts & seeds, olive oil, fish (non-fried), wine, eggs and fresh herbs. Dr. Mischley verbally added coconut oil to the list at WPC and on Chuck’s call.

♦ Foods correlating to a significant negative impact were, in order of greatest negative impact to lowest, canned fruit, diet sodas, fried foods, beef and canned vegetables.

If you want to calculate your PRO-PD score, visit www.propd.org. This site will compare your score (symptom severity) with average scores of others with the same period since diagnosis.

If you would like to participate in Dr. Mischley’s online study, visit www.camcarepd.bastyr.edu. In order to participate, you must (a) have a diagnosis of PD, parkinsonism or related Parkinson-plus syndrome, and (b) have online access, an email address, and basic computer literacy. The study involves completing a thorough questionnaire once every six months. You do not need to use CAM therapies to participate. Individuals from anywhere in the world may participate. You may participate regardless of health status. If you have questions, contact Dr. Mischley at neuroresearch@bastyr.edu.

If you are interested in nutrition and its effect on the brain, Dr. Mischley recommended the following books to Chuck: Grain Brain and Brain Maker by David Perlmutter, The Brain That Changes Itself, by Norman Doidge, and 10% Happier, by Dan Harris. She also recommends the following movies: Fat, Sick and Nearly Dead and Fed Up. Chuck has read, and recommends, Dr. Mischley’s own book, Natural Therapies for Parkinson’s Disease.

Coming Up Next Week: “Exercise–The “PATH” Forward”

5 responses on News From the Front: Key Takeaways from the World Parkinson’s Congress, Part I (Diet, Exercise & Supplements)

  1. Hi Larry & Alan,

    Yes, I buy the LivOn Glutathione (GSH) product from Amazon. I try to always purchase from LivOn as the vendor (fulfilled by Amazon), because I’m a little weary about unknown suppliers.

    I’m currently taking it twice a day. That might be overkill, but I think this works better for me.

    They recommend taking on an empty stomach, and not to eat for 15 minutes.

    I take it first thing in the morning, and and about a half hour or more before bed. I wait at least 15 minutes after to take other meds or supplements.

    I think it does make a difference for me, but I’d like to try nasal for better absorption.

  2. Alan, your questions are excellent, but if they were addressed in the roundtable I did not capture the response in my notes. I’m putting the information we received out there to suggest further research and conversations with your doctors or to make an appointment with Dr. Mischley to receive advice specific to your circumstances.

  3. Is it the Lypo-Spheric Glutathione packets 450 mg per on Amazon for $59.95. When is the best time to take it with or without food with or without medicine?

  4. Thanks for your comment, Brett. Your observations on your blog are insightful and thorough, as well!

    In the roundtable discussion, Dr. Mischley did mention the LivOn Labs (liposomal) oral glutathione. As noted above, she also sees Parkinson’s patients and prescribes intranasal glutathione from Key Pharmacy. She does Skype/telephone appointments on Mondays for those who aren’t in her area (I made an appointment for next March, the first available). Here’s a link to Dr. Mischley’s practice, Seattle Integrative Medicine: http://www.seattleintegrativemedicine.com/contact.html.

  5. Thanks for sharing this article, I’m sorry I missed that roundtable.

    I am curious what brands of oral glutathione are recommended, or that anyone has experience with. I’ve been taking the LivOn Labs (liposomal) version. I think it makes a difference. I have stopped a couple of times, but after a week or two, I start noticing that my symptoms are worse, and I go back to it.

    I’d love to try intranasal glutathione, but I don’t have a doctor that would prescribe it. Then again, I am seeing a new MDS next month, and maybe she would agree that the prescription route is better than me ordering the other via Amazon.

    FWIW, I posted my observations from WPC 2016 on my blog at http://parkinson.fit/reflections-on-world-parkinson-congress-2016/

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