This was my first time attending the World Parkinson Congress. I suppose that is understandable considering that the congress is held every 3 years, and it has only been 2-1/2 years since my diagnosis. Prior to that, PD was not on my radar. As a congress newbie PwP, I thought I would share a few of my thoughts and “take-aways” from the congress, in no particular order of importance or relevance.
Overall, the main theme that I noticed is that exercise is the best medicine for PD. It may not be as effective at treating PD symptoms as l-dopa, but all the research and anecdotal evidence clearly shows that collectively, those who exercise regularly enjoy a far better quality of life with PD, for a longer period of time, as compared to those who do not. While medical research continues to be important, the best thing that can be done for the growing number of People with Parkinson’s (PwP) today is to encourage exercise.
There is a growing consensus that more exercise is better, and there is concern that many PwP are being given outdated exercise recommendations. I posted more detail on these recommendations in a separate article: How Much Should I Exercise for PD?
There are a lack of studies to conclusively state what is the best form of exercise, but that is probably because there is no single best form. A lot of presenters said the best exercise is the one that you enjoy and commit to doing regularly. To some extent, I agree, let’s face it, any exercise is better than none. But I also think it is important to keep pushing yourself and improving your level of fitness. It is also critically important to do exercises that directly address PD issues of muscle weakness and balance.
Dance seemed to receive the greatest amount of attention in the presentations that I saw. “Dance Through Life” by Rafi Eldor won the People’s Choice Award in the video competition, and I would agree that this is a very inspiring story and video.
The Mark Morris Dance for PD program was also frequently referenced, as was Pamela Quinn, a dancer who has used dance to battle her PD symptoms for over 20 years, and assists groups in starting PD dance programs.
There were also numerous references to bicycle riding, where based on the research of Dr. Jay Alberts, there is a recommendation of maintaining 80 to 90 RPM for 60 minutes, at least 3 times per week. There were a number of people I encountered at the congress who were using cycling to fight PD with convincing results. Nan Little’s video tells one story of an avid PD cycler:
On the way to the congress, I read Nan Little’s book, If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?: Courage, Tenacity & Love Meet Parkinson’s Disease. I highly recommend it…well written and inspiring. The book is available on Amazon.
Pedaling for Parkinson’s is a good place to go for more info on bicycling programs, and the program is offered at some YMCAs.
Boxing programs also received many positive references, noting that programs like Rock Steady Boxing, have elements that combine high intensity cardio (like bicycling) with purposeful movement (like dance). That said, I get the general perception that if you haven’t ever participated in a PD Boxing class, you really don’t understand it.
As I’ve previously posted, I’m a firm believer in the effectiveness of these programs, and I made this video to give an idea of some of what we do in our local class, which is a Rock Steady Boxing affiliate.
Tai Chi, Alexander Technique, LVST and Parkinson Wellness Recovery (PWR!) also had their advocates. Admittedly, I need to learn more about these programs. I have dismissed them in the past, as my attention is drawn to what I consider to be more vigorous exercise programs. But I also understand that what we define as vigorous exercise varies greatly based upon an individual’s current level of fitness.
Also on the subject of fitness, it was great to see “fast walking to reverse PD” legend John Pepper in the Poster Presentation area. While his actual physical poster was less than inspiring, John is an inspiring individual in person. I was particularly impressed by his frequent trips up and down the aisles coaching PwP on how to improve their walking. “Posture up. Head up. Shoulders back.” “Push off with the toes. Straighten the knee, then consciously bring the heel to the ground first.”
John is a somewhat controversial figure, having initially made claims to have reversed Parkinson’s Disease. (In fact, that’s the name of his book and website.) He has since clarified that what he meant was that, using his techniques, he has significantly reversed his PD symptoms.
Stylistically, John’s writing style could benefit considerably from an editor and/or co-author to help him better present his material. (Although I will admit his 2016 revision is much improved.) Still, his message is compelling, and considering he was diagnosed with PD 24 years ago, quite convincing.
After encountering John, I have found myself giving more considerable thought to my stride, and occasionally glancing downward to observe how others walk and compare that to my stride. He recently produced a video to summarize some of his key suggestions for fellow PwP. The spoon and glass tricks that he mentions in this video are also very interesting observations. I’ve made similar grip adjustments myself, without having realized that others might also benefit from this advice. Similarly, I switched to block capitals for legibility in hand writing many years before diagnosis. Hmm…
At one of the sessions, a question from the audience, probably inspired by someone who had spoken to John, asked the panel if fast walking could reverse PD. The presenter who responded (I think it was the ever eloquent Tim Hague Sr.) had a simple, but excellent response explaining that while there is no known way to reverse PD, walking well is an extremely valuable skill for a PwP to enhance and maintain.
It’s not really fair to mention Tim Hague only in passing, especially as I’m not 100% certain he was the one who made that remark. Tim is one of the most inspiring motivational speakers with Parkinson’s Disease. Tim is a minor celebrity in Canada, having won Canada’s version of The Amazing Race reality TV show. Tim presented an expanded version of his excellent 2015 TEDx Talk, which if you have not heard, can be watched below:
Another interesting speaker with Parkinson’s (SwP?) was Jon Palfreman. Jon is a science journalist, writer and producer, who when faced with a PD diagnosis wrote one of the best books about Parkinson’s Disease in recent years, Brain Storms. This fascinating and educational book is available on Amazon. A rather lengthy (hour long) interview with Jon Palfreman was aired on C-SPAN, and can be watched below:
Dr. Bas Bloem from the Netherlands was another consistently strong and insightful presenter. As a practicing neurologist, he addressed the issue of doctors needing to consider how lost a patient can be when presented with a PD diagnosis.
Bas was a particularly strong fielding audience questions, both after his presentation, and during sessions where he served as moderator. I loved his response when someone asked about cannabis and PD. He said something to the effect of “Well, we are in Portland, where it is legal. I believe in America the saying is smoke ’em if you got ’em. Of course, I am from Amsterdam.”
Of course, I would have preferred a direct answer to that question. While much of the interest in cannabis for PD patients is focused on pain relief, there are some who suggest that CBD oil (without the THC part that produces the ‘high’), may offer some PD symptom relief. So, this was a great question, but as with many audience questions, it was off-topic and outside the scope of the previous presentation for which questions were being fielded. There was no expert on that topic available to answer the question, and no clinical study to back the anecdotal reports.
Well…this summary is a lot longer than I thought it would be, but there is a lot more that should also be mentioned.
Brian Grant was very active at the congress, motivating attendees with talks about his journey and the work being done by the Brian Grant Foundation. A 12 year NBA veteran who was diagnosed with PD 8 years ago at the age of 36, Brian is living proof that exercise will not prevent PD. But he understands how important exercise is at fighting back against Parkinson’s, and his foundation is spreading the word about exercise and nutrition.
Last month there was a great article about Brian in The Players’ Tribune: http://www.theplayerstribune.com/brian-grant-lakers-parkinsons/ A short excerpt:
As I started to meet other Parkinson’s patients, and people who knew others who were dealing with Parkinson’s, I saw that the ones who were proactive and exercising were doing a lot better than the people who weren’t moving around. The more I read about the disease, the more I learned that if you’re not up and active, you’re that much closer to shutting down.
When I realized that, and when I remembered who I was — an elite athlete, a 12-year NBA veteran, someone who knew all about nutrition and being fit — I finally found my place in the fight.
I aimed my foundation, the Brian Grant Foundation, at a new purpose: encouraging and empowering people with Parkinson’s to be proactive with their care.
Medication doesn’t work for everyone. But exercise that opens you up like Yoga and Pilates, as well as being conscious about your nutrition, is going to positively affect the way you progress. I guarantee, if you put me next to two versions of myself 10 years from now — one who is active, and one who isn’t — you’d see a major difference.
In one of Brian’s presentations, he talked about how the Parkinson’s World of fellow patients, care givers, doctors and researchers were his team now. And I believe he was being genuine, as I saw him spend hours at his foundation’s booth in the exhibit area, challenging others to shoot hoops and making personal connections.
I’d also be remiss if I didn’t mention May May Ali, remembering her father Muhammed Ali. Her talk was one of the highlights of the opening session.
There was also a lot of talk about Deep Brain Stimulation (DBS)…mostly positive, but emphasizing the importance of setting patient expectations accordingly. To that point, DBS is generally effective for improving tremor and dyskinesia. However, it is not very effective for other PD symptoms such as gait, freezing, balance, speech and cognition.
Andy McDowell (of the ‘Smaller’ PD video) talked about DBS and his personal PD journey.
And if you haven’t seen ‘Smaller’, a video he produced for the 2013 congress, it is below:
Another topic of significant interest was the possible connection between our gut bacteria biome and PD. Indeed there are a growing number of people who believe that Parkinson’s begins in the gut.
Unfortunately, no new news was reported. The only scientific take away is that three credible clinical studies have been published, which clearly show that there are significant differences in the bacterial composition between the biome of PD patients and healthy controls. These studies do not show whether differences are cause or effect. And although there are at least the same number of bacteria cells of in our bodies as there are human cells, little is understood about much of this bacteria.
The panelists generally recommended pre-biotics, but were less convinced about the effectiveness of probiotics. (Undeterred, I’ll continue guzzling my kombucha and kefir.) Fecal transplants continue to be seen as extreme, but there is general agreement that not enough is really known at this point, and that research definitely needs to continue.
If you’re not familiar with the brain gut connection, Google “gut brain connection” for more info.
Speaking of supplements, the general tone from speakers was that they were expensive, unproven and unnecessary, but not necessarily harmful. It is better to acquire nutrition from foods. (I agree in theory, but as long as I’m doing well, I’m sticking to my supplements.)
Brian Grant related his experience of starting his PD journey with a naturopath, but the buckets of pills didn’t work for him, and made him nauseous.
In another panel session, a panelist defended supplements, giving the example of CoQ10 studies. It was deemed ineffective by the overall study, and was dismissed. However, for 30% of the participants, it made a difference. How does one know if they are potentially part of that 30% instead of the 70% majority?
This also brought up the topic of the placebo effect, which looms very large in many PD studies. That is to say that there are patients who see improvement when they are part of a control group that is not actually receiving the treatment being tested, but they believe they are. These improvements are real and show the brain has some capability to make temporary improvements, if the patient simply believes that they will improve.
There is so much more I could mention, but since we are now over 2000 words, this is clearly TL;DR (too long; didn’t read) territory. That means we are going back to the poster presentations…that back area of the exhibit hall with a mix of scientific topics and more general living with PD topics.
On the semi-scientific side, results from the Bastyr University Patient-Reported Outcomes in PD (PRO-PD) survey were interesting. The survey asks PwP about their diet, exercise and supplement regimens, and correlates this information with a self-assessment of PD progression.
The survey results indicate that the more days per week that a person exercises (up to and including 7 days per week), for at least 30 minutes, the slower the PD progression. Supplements that were associated with positive results included oral glutathione, Azilect (prescription), and CoQ10 (all part of my daily routine). Positive food choices included fresh fruit and vegetables, nuts and seeds, olive oil, fish, wine and eggs. Canned vegetables and fruit, beef, fried foods, and diet soda were considered slightly negative. Dairy was considered neutral.
Certainly an interesting survey, but important to consider that this is a self-assessment, and the survey participants may not be representative of the overall PD community.
Another poster that caught my eye was from PwP Bill Curnow.
Bill was in the hospital for an issue independent of his PD, during which time he has given a Flagyl (antibiotic) IV treatment. After this treatment, his PD symptoms went away for 2 weeks.
As a follow-up, he went to see famed Australian gastroenterologist Thomas Borody at the Centre for Digestive Diseases in Sydney. Similar results occurred with another Flagyl IV treatment.
Bill believes that harmful gut bacteria in his biome are causing or contributing to his PD. Of course, we all know about placebo effects in PD. So, without validating his story, it is hard to draw a conclusion. Personally, if I had the experience that Bill did with the Flagyl IV treatments, and my PD temporarily went away, I would be back at Borody’s office for a fecal transplant ASAP. But, I guess PD might not be an approved condition for the treatment, even in Australia.
I enjoyed talking with Bill, and his story does make me wonder whether I should have my gut bacteria tested. Bill’s website is http://biomiclife.com.
There’s more I could cover, but this post is already too long.
If you’ve read this far and are interested in more information about the 2016 World Parkinson Congress, here are some helpful links:
The abstracts are interesting to skim through. If one of the topics in the abstracts is of interest, you can generally Google the title and presenter name for more information.