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I have a request to make of readers. I have been invited – with Parkinson’s advocate AC Woolnough – to conduct a round table at the upcoming 2019 World Parkinson’s Congress meeting in Kyoto. The round table is a discussion involving 10-20 people sitting around a table. Our topic will be how can we better align the efforts of researchers and patients. And this is where we would like your help. Or at least, we would like your input. Specifically, we are seeking topics for discussion at the table regarding how we can better join the goals/focus of the community on the research side of things. In today’s post, we look at what the World Parkinson’s congress is, how the round table topic came about, and what we are currently thinking regarding the structure of our roundtable session.
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Yasaka Pagoda and Sannen Zaka Street. Source: JT
It was the capital of Japan for more than one thousand years (from 794 to 1869).
It sits 315 miles southwest of Tokyo and 25 miles east of Osaka.
It was the setting of the world’s first novel in the world (Shikibu Murasaki’s The Tale of Genji).
It has over 1000 Buddhist temples (including the hugely impressive Fushimi-Inari-Taisha), and more than 2,000 temples and shrines collectively.
Fushimi-Inari-Taisha. Source: Medium
It has the oldest restaurant in Kyoto, Japan (called Honke Owariya, which was founded in 1465).
It had its own civil war – referred to as “Onin no Ran” (Onin War) – in the 15th century. The war lasted 11 years (1467-1477) and focused on two families of samurai warriors seeking power in Kyoto.
It is the home of the video game company Nintendo and Nightingale Floors:
It holds 20% of Japan’s National Treasures and 17 UNESCO World Heritage sites (including Kiyomizu-dera, Ryōan-ji, Saihō-ji, Tō-ji, and Kinkaku-ji.
It has 1.5 million residents (and 50 million tourists per year).
It consumes more bread and spends more money on coffee than any other city in Japan (I wonder why?).
It has the longest train platform in Japan (at JR Kyoto Station – 564 meters long!).
It is Kyoto.
Kinkaku-ji. Source: AWOL
And in June of this year, the World Parkinson’s congress will be held in this beautiful city.
What is the World Parkinson’s congress?
According to Wikipedia, “The World Parkinson’s Congress, often referred to as the WPC, is a non-religious, non-political, and non-profit making organization concerned with the health and welfare of people living with Parkinson’s disease and their families and caregivers“.
“Founded in 2004, the WPC aims to bring the Parkinson’s community together, under one roof, to allow for cross-pollination of community leaders to create opportunities to generate more robust ideas around the science and care of Parkinson’s”.
The idea for the WPC originally came from a meeting in Washington, DC in 2002. Dr. Elias Zerhouni – the head of the National Institutes of Health at the time – suggested that the Parkinson’s community should create a meeting which was inclusive of all those whose lives were touched by Parkinson’s (patient participation is very plate du jour today, but this must have been pretty revolutionary stuff back then).
Dr. Elias Zerhouni. Source: WSJ
The idea was championed by Mr. Robin Elliott, President of the US-based Parkinson’s Disease Foundation (PDF) who asked legendary neurologist Prof. Stanley Fahn to help launch the World Parkinson Congresses.
Prof Stanley Fahn. Source: Youtube
In 2004, Dr. Fahn launched the World Parkinson Coalition – the organization that is responsible for setting up each congress meeting. He went on to organize the first three Congresses (WPC2006 in Washington, DC., WPC2010 in Glasgow, and WPC2013 in Montreal). He then stepped down as President in 2013, and Eli Pollard took over the management of the World Parkinson Coalition.
The amazing Eli Pollard. Source: Tmrwedition (interesting interview!)
Since then the congress was held in Portland (Oregon) in 2016 and the World Parkinson Coalition has been preparing for Kyoto since then.
And that preparation effort is enormous – click here to see all of the individuals involved with the organising of an event on this scale.
It is a massive team effort.
Source: Jpdl
The WPC is a huge event – so big in fact that it conducted over 4 days.
And attendees come from all different parts of the globe. At the previous WPC meeting which was held in 2016 in Portland (Oregon), over 4,550 delegates from 65 countries attended.
In general, it is a coming together of the wider Parkinson’s community – from patients and their families to researcher (clinicians and basic scientists), and from stakeholders (support/charity groups) to government/regulatory organisation representatives.
All in one place to talk and learn about what is happening in the world of Parkinson’s and how we can plan for a better future.
Source: Parkingsuns
Now, I can not speak to experience as I have never been to a WPC meeting before, but I understand that it is the event that everyone wants to be at.
I have previously been surprised at the level of importance most scientists in the field of Parkinson’s research put on this meeting – for many it is THE meeting of the year.
A full house. Source: Parkingsuns
Sounds interesting. What does the conference involve?
Something for everyone it seems (Click here to read the program).
There will be
- Lecture presentations from some of the best Parkinson’s researchers in the world – providing insights into what we know about the condition. In addition, prominent figures within the community will also be presenting lecture talks on important issues associated with Parkinson’s.
Former NBA star Brian Grant (of the Brian Grant Foundation). Source: Parkingsuns
- Lots of workshops (everyday) discussing everything from the latest in wearable technology for Parkinson’s through to exercise and diet. Each workshop has very specific topics.
- Book corners where one can meet authors of books on Parkinson’s.
- Art and performances inspired by Parkinson’s, everything from painting & poetry through to quilting.
Source: Parkinsonswomen
- Poster presentations regarding all things Parkinson’s – from research to resources.
Source: WPC
- A Care partner lounge, where those involved with the difficult task of supporting loved ones can find support and useful tips/resources.
- And Roundtables
What do roundtables involve?
Answer:
Just kidding.
Round tables are discussion sesstions set around a table of 10-20 individuals. At the WPC, they cover all manner of topics. They are all in the afternoon session between 1:30-3:00 or 3:30-5:00.
The group has 90 minutes to brainstorm/share experiences/propose new ideas/whatever-you-fancy.
A roundtable. Source: ParkinsonsUK
And you are doing a round table?
Amongst other duties, yes.
And I will be conducting that roundtable with AC Woolnough.
Who is he?
Parkinson’s advocate extraordinaire. He really requires no introduction, but for the sake of newbies:
A former teacher & high school principal for 37 years, AC was diagnosed in 2014. Rather than simply accepting his situation, AC has thrown himself at Parkinson’s:
- participating in more than 25 studies
- training as a Research Advocate with the Parkinson’s Foundation
- being a member of their People with Parkinson’s Advisory Council
- serving on the OHSU (Oregon Health and Science University) Parkinson’s Patient Advisory Council
- reviewing Parkinson’s research grants for various organisations
- participating in numerous fundraising efforts
- chairing his local Parkinson’s support group
- AND writing a monthly magazine column about living with Parkinson’s.
Oh, and he’s also one of the official Ambassadors of the WPC 2019.
His experience makes him intimately familiar with the topic of discussion at our round table.
And remind me what the topic of your round table is?
Our round table will be on Wednesday 5th June at 1:30 – 3:00 PM, and is titled:
Round Table 12: Planet Patient vs Planet Researcher: How do we align instead of collide?
Planet Patient vs Planet Researcher?
This part of the title stems from a blog post written by another Parkinson’s advocate – Mariëtte Robijn:
Mariëtte keeps a great blog that I follow and a while back she who wrote a wonderful piece called “Planet Patient vs Planet Researcher” – she was asking ‘are we really so very different, we patients and researchers?‘. Her answer is ‘Yes‘ and she listed 10 areas where the differences are apparent.
The SoPD responded to this post – click here to read that rant.
And then others joined in the discussion (Click here to read Prof Frank Church’s post – he has a special perspective on this matter being an inhabitant of both planets).
I see. So what did you want help with?
Not so much help, but rather input.
AC and I are planning on starting the round table session by introducing ourselves and sharing our stories (and introducing our fantastic interpreter Hisashi Kamido).
We will then invite attendees at our table to introduce themselves.
And then we will start discussing the topic of how we can better align the efforts of researchers and patients, before opening up the discussion for everyone at the table to share ideas/thoughts.
Sounds very straight forward. So why do you need my input? How can I possibly help?
AC and I would like to open this discussion up to a wider audience, particularly for those who are unable to attend the WPC.
While readers will not be able to actively partake in the discussion, they can still potentially contribute to it and provide some interesting ideas that could be discussed.
And all of that said:
- Do you have some thoughts on this topics that you think we should discuss by the group at the round table? (Credit will be given to each contributor)
- Do you have any specific ideas for encouraging better alignment of the efforts of researchers and patients?
- What barriers do you see in these efforts? And are there proactive steps that could be taken to address them?
- What tools/resources/initiatives are you aware of in your part of the world that have helped in this endeavour of bringing researchers and patients together?
This request for input is not because AC and I are afraid that we won’t be able to fill the 90 minutes with discussion (just try and shut me up!). We just thought it might be interesting for attendees if we opened up the discussion to a global audience to get different perspectives.
Source: gdeltproject
By doing so, folks in Kenya, Mongolia or anywhere could help structure the discussion and perhaps provide examples of how they are encouraging the collaborative efforts of researchers and patients in their part of the world (and those examples could also be things that didn’t work as well).
And yes, we are being purposefully vague here to see what kind of responses we get.
Interesting idea, but if I’m not there how will I know what was discussed?
Our goal is to provide feedback on topics that are discussed in the form of a post here on the SoPD website (and maybe on the WPC website – though we haven’t discussed that with them yet). We will try and re-tell as best we can what was discussed.
If you would like to contribute, you can leave a message in the comments section below or contact me directly.
Please have a think about it.
You don’t need to answer immediately, we have a few weeks before the big day.
And please don’t feel shy about sharing what you might consider obvious or perhaps silly ideas. What is obvious to one person, might not be so obvious to another (especially when they apparently live on different planets).
Source: Lavanguardia
I am really looking forward to the World Parkinson’s Congress in Kyoto.
As I said, it will be my first WPC. I am very excited about it, but I have no expectations (except that it will be exhausting).
Sage wisdom. Source: Unitystone
I am also looking forward to Kyoto. I am lucky enough to have visited the city once before and it is truly wonderous (and the food!!! Where do I start?!?).
My Japanese is a bit rusty though, and I remember most of the road signs etc were in Japanese characters. So I have downloaded a couple of Japanese character translator apps for my cell phone. Waygo and the Google translate apps seems to work rather well (not an endorsement, just what I have found in my investigations). The locals are lovely people though and very helpful so we should be fine.
I will be at the WPC for the 4 days of the meeting. And if you are attending and you see a ridiculously tall, freakishly good looking guy standing in a corner madly typing on his laptop, please feel free to go up and disturb him to say Hi.
He will be happy to chat.
ADDITIONAL:
I don’t get back to New Zealand very often.
In fact, in the 18 years I have been away, I have been back all of 4 times – much to my poor mother’s disappointment. In my defense, it is a long (27 hours one-way) and expensive trip to make in rather cramp quarters for one of XXXXL proportions.
I know. That’s not much of an excuse.
And yes, I am a terrible son.
As a result of this terrible neglect, anytime I fly anywhere outside of Europe my mother will tell me that my destination is half way to NZ (whether it is or not), so I have to come home and touch base. And in the case of Kyoto, she has a point.
Anyways, on route to Kyoto I will be making a slight (11 hour) detour to NZ. And during that detour, I will be making a presentation at an event in Auckland that has been organised by the good folks at Parkinson’s NZ.
The event, entitled “Advances in Parkinson’s Research in New Zealand & Around the World” will be held on the 28th May (starting at 10:30am).
The chair of the event will be Dr Barry Snow and the list of speakers includes Sir Prof Richard Faull and Prof Maurice Curtis.
Prof Maurice Curtis & Sir Prof Richard Faull. Source: Neurovalida
If you are in the area and interested in attending, please click here to learn more.
The banner for today’s post was sourced from WPC
The Science of Parkinson's 
This is what concerns me, and it should not happen this way: https://www.trialsitenews.com/clinical-research-as-care-cut-the-patient-off-post-clinical-trial-a-lose-lose-in-the-end/ It is an important point that drug manufacturers owe a debt to those who volunteer for clinical trials. Companies certainly could not profit without proof of efficacy offered by these volunteers.
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Could you send me your current email address, as I have a PDF to share with you on this – thanks
chris
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Hi Chris,
The best email to find me on at present is scienceofparkinsons@gmail.com
Kind regards,
Simon
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Encourage PwP to become researchers. PwP have an enormous range of skills, from mathematicians to nurses, from chemists to computer programmers and from doctors to engineers. These skills are not lost at the moment of diagnosis. Moreover, the slow progression (although, unfortunately, not slow enough) of PD gives enough time to get up to speed.
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Indeed. Skilled PwP may well out-number the conventional PD researchers. And able to take a broader view of PD than a team committed by funding constraints, and effort !, to one small area. We need a voice. My own approach is akin to “Self-hacked iPD”, and I know I am not alone. But we lack a recognised forum where our various regimes can be put to open discussion.
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I willl also be in Kyoto.
I believe PD is a metabolic disorder with neurological manifestations. So start looking at our body’s deficiencies and stop wasting time testing drugs to cure the symptoms!
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Do get in touch with https://www.ndcn.ox.ac.uk/team/francesca-bowring who’s running a very interesting study “Top 10 PD” where she’s getting a panel of respondents to rank their top priorities for where research effort should go in Parkinson’s. The study is still in progress so her list of topics is still shifting as respondents rank them and then review their rankings later in an attempt to reach eventual consensus.
Sorry I can’t join you in Kyoto, but we have spies on the ground and will be receiving detailed reports on your activities 🙂
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There is extraordinary research being done in basic science concerning generic drugs and naturally occurring substances. The two outstanding drugs presented in ScP past 5 years is Baicalein and Doxycycline based upon their ability to interact with A-syn. In my opinion, best thing a patient like me can do, when the drug is both safe and available, is “Just Do It”. Myself, I take Baicalein and Doxycycline with what seems like excellent results. I can see the improvement in clinical symptoms; but I will not know for another 5, 10 or 15 years (I’m 76 now) if prevents Lewy body dementia. If works, that is good for me. The issue is, how does the Parkinson Disease Community benefit from the experience of thousands of patients like me, that have no intention of waiting for clinical studies that will never be done on generic drugs like Doxycycline and natural substances, like Baicalein, because there is no commercial incentive.
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My partner who has PD is taking baicalin (from liftmode). My understanding is that baicalin is converted to baicalein in the body, and so should have similar effects to the baicalein. I have not found an accessible source of baicalein; can you tell me where you obtain it?
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Many of the previous comments wrt generic drugs, OTC and natural substances and lack of feedback from the PD community as well as the impatience for some sort of hope suggests that hosting of a moderated website where people can give such substances an overall score (5 star to negative!) and a set of tick or score boxes for specific aspects and a comment about dosage and experience would be extremely valuable both for researchers and patients.
Feedback from a moderator that a particular substance combined with eg levadopa is a particularly bad idea would also be an asset!
Then allow people to sort the substances by star score, and by symptom, so that someone looking eg for the best score for something to help with some particular aspect pf PD can easily find it.
For instance my other half who has PD has now been taking Nicotinamide Riboside (Tru Niagen) for a bit under 2 months at the recommended dose of 250mg (2 tabs)/day. After about one month he seemed a bit more cheerful, and has more energy, more often going to bed at 9.30pm, rather than 8.30, and so far this seems still to be improving. So I would give that substance a 3 star general rating with a 4 star rating for energy levels, and a 2 to 3 star rating for mood improvement. BUT a 1 star rating for price, though easily available eg via Amazon. So far it does not seem to have any significant effect on his other symptoms such as “the shakes”, or constipation, or urinary urgency, so no entry in the columns for such symptoms. I am now going to shell out for a 3 month stock, and if such a website existed, check back after 3 moths to confirm whether I still believe the price is worth paying.
In contrast vitamin B12 (1000 mcg) which he has been taking for the last 4-5 months is cheap, but does not seem to have that much effect so I would give that a 1 star for general effect..
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I think this sounds very practical. I have early Parkinson’s myself, and would like to know what other have evaluated along with sharing my experiences. Mannitol, for instance, has been effective in restoring some sense of smell for me, and dance movement quite helpful.
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I would like to see more research time with cannabis comma THC, CBD oils. With my experience so far, it helps tremendously for pain calming anxiety, depression and sleeping! Unfortunately I cannot afford to come out of pocket. I believe if we have more doctors involved, we can possibly have insurance pay for it.
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Simon, not once so far in my time since diagnosis 5 years ago has anyone asked me “what do you think we (researchers) should know that you think we may not already be aware of ?” or “can you think of any other questions which we haven’t asked you but should have?”.
Of course I can talk with my doctor about these things – but these ideas for possible disease associations don’t make it to the research community.
I bet nearly every PWP has something “funny” they noticed at some point in early disease, or an unexplained/undiscussed correlation that has lingered in their mind. Something that might point in a fruitful direction, or lend support for an existing path of research.
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Oh- and then there is the perennial matter that sporadic clinical UPDRS assessment is not a very good measure of the state of “my” PD at many given points in time. It would not be a very sensitive tool for assessing the efficacy of a disease modifying treatment for me (pretty useless actually).
Research needs to address this – and at least find out from (many) patients what might be additions to/alternatives to the “standard” approach.
To start, could we not ask patients how closely the historical track of UPDRS tracks the patient experience. Or even just the change from one clinical visit to the next? Then ask “why not”.
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I believe there has been some work done on revising UPDRS, although I’m uncertain of the extent to which these revisions have found their way into clinical use.
https://www.sralab.org/rehabilitation-measures/movement-disorder-society-sponsored-unified-parkinsons-disease-rating-scale
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Hi Simon,
Thank you for opening this space up for contributions.
In one of your previous posts, (the February 18 post on the SEAM meetup), one of the suggestions that came out of the session was to ‘gain a better understanding of the actual participant experience of the process’. Viewing an end-to-end scenario through multiple points of view and synthesising a solution is fundamental operations management. This got me thinking – there are a few areas I’ve been struck by while participating in a trial that could really benefit from this kind of thinking.
Along the same lines, it seems to me that the question (how do we align planet researcher and planet patient?) can be framed as an operations management problem. (actually, many different operational management problems depending on context). So, for better alignment would it be an idea for patient advocacy groups to hire an operations manager?
Regards,
Paula
P.S. If anyone wants an accessible article on what operations management is, here is my suggestion: https://slate.com/business/2012/06/queueing-theory-what-people-hate-most-about-waiting-in-line.html
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A topic that is getting a lot of attention in caregiver groups, is the cognitive/personality effects. In the literature and other resources, they are only described generally, ex: executive dysfunction, apathy, impulse control disorders, etc.
We know that everyone’s symptoms/behaviors differ, but having real life examples would help us identify them in our loved ones earlier, which would have a huge positive effect on our relationships with our PWPs.
The only place I have found detailed discussion of these symptoms is in Facebook groups for caregivers, and that is only recently.
Most of the resources and research available mention nonmotor/cognitive/personality change issues briefly, but they can have a bigger impact on quality of life for PWPs, and their families than motor symptoms.
Research and treatments focus almost exclusively on motor symptoms. Nonmotor symptoms, especially behavioural changes is a topic that would be enormously helpful to a huge number of people.
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Hello,
This sort of meetings is clearly missing something in my opinion as first one was in 2002(17 long years).
They supposed to change system to intensify process from not to discuss over and over the same stuff. People responsible needs to talk only about follow up to what is done. 7000 papers about PD every year- it is clearly already heard of, just needed to be single out through putting efforts not to “why” rather to “which one”. Participants of such events needs to share ideas how to speed up testing existing ideas through maybe by creating common database of everything about PD research with compulsory sharing every news on PD with free access to all people who is working on it.
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Hi,
Maybe I am alone in this, but the criteria I use before I enroll in a study (and I’ve done two) is to be sure I will have a turn at the actual drug/procedure being tested. In other words, since one can only participate in one study at a time, I am not willing to give up possibly a year (or more!) of my valuable “early PD” time to discover I’ve been on placebo…and that’s that.
The best studies–from my patient perspective–have some sort of “all on” phase, so eventually everyone gets at least a taste of the medicine. Or else I suppose there could be some sort of guarantee that if the drug appeared to work, all study participants would have access at the end…?
I’m not sure, but the fact is, while I’m happy to be a lab rat I guess I also have a selfish streak!
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I agree that some chance at the trial drug, especially if it seems to have some positive effect, is only fair to the participants.
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Regarding the alignment of researcher and patient efforts:
As a caregiver for my partner, who is a PD patient, I am constantly looking for approaches that are available right now to address specific issues that my partner is encountering in the course of experiencing the progression of her illness. “Right now” often means using substances available over the counter, although it can also involve off-label uses of existing medications.
Frequently, the approaches available from clinicians are inadequate, and so I find myself experimenting with other approaches and concepts, inspired loosely by ideas that I have picked up by reading various research documents, and of course by reading the Science of Parkinson’s Web site.
What I would most desire from the research community is a Web site where specific questions could be posted by patients regarding technical points that I’m examining in the course of crafting approaches to my partner’s issues. I’m not asking for advice regarding treatment, but rather, for information that would help me in my attempts to develop (or discard as inapplicable) approaches of my own.
Let me give you a specific current example, simply to illustrate what I have in mind. My partner is presently experiencing acid reflux as a non-motor complication of her PD. Common clinical approaches involve suppressing stomach acid, an approach that has all sorts of undesirable side-effects.
My understanding of the issue is that in PD the vagus nerve can become damaged by aggregated alpha-synuclein, and that this nerve controls the opening and closing of the esophageal sphincter valve (ESV) that is located where the esophagus attaches to the stomach. This damage can cause the ESV to fail to close when it should, allowing stomach acid to push up into the esophagus, resulting in heartburn, and eventually damaging the esophagus.
So, the fundamental problem is not too much stomach acid (which after all is needed to digest food); the problem is that the valve is not opening and closing as it should. I think it would be most ideal, then, to craft an approach that restores the function of this valve.
Now, my understanding is that the vagus nerve’s function is largely cholinergic. And I recall that the medication pyridostigmine, which is an acetylcholinesterase inhibitor that cannot cross the blood-brain barrier, has been used with success, for some patients, in addressing neurogenic Orthostatic Hypotension (nOH). It does this by allowing those cholinergic neurons that remain in the nerves that control vascular constriction (as part of parasympathetic regulation of blood pressure), to function more effectively, thereby compensating somewhat for sibling (parallel) neurons in those systems that have become damaged.
So, my specific question in this instance would be: Is it reasonable to think that taking pyridostigmine might similarly affect the functioning of the *vagus* nerve, thus allowing active control of the ESV to be restored, and thereby reducing the occurrence of acid reflux?
A second, related, question would be: Would it also be possible that ingesting an exogenous source of acetylcholine, such as choline alphoscerate (aka Alpha GPC), or CDP-Choline, might have a similar effect to the pyridostigmine (and with fewer side-effects), due to the uptake of the additional acetylcholine into cholinergic neurons, allowing the vagus nerve to function more effectively by improving the capacity of its neurons that remain undamaged or less damaged?
In coming up with this second question/concept, I am reasoning by analogy from the ASCOMALVA study, which showed that donepezil, an acetylcholinesterase inhibitor that does cross the blood-brain barrier, had its positive effects upon cognition approximately tripled by the addition of choline alphoscerate, and other studies showing that choline alphoscerate alone arguably was even more effective by itself.
I have been unable to find any information that would either confirm or deny the two hypotheses (regarding the vagus nerve) elaborated above. So, if there were a site to which these two questions could be submitted, it would be very helpful to a patient or caregiver like myself in determining whether a given idea is worth pursuing or should be rejected. Someone from the research community might be able to see immediately that there are specific reasons why a particular approach would *not* work, and state those reasons.
Again, I believe that helpful information of this kind could be provided without risking the perception that specific actions were being recommended to the inquiring patients. To simply say, “No, here is the error in your reasoning,” or to say “Well, I don’t know of anything specific that would make that line of inquiry a dead end” would seem to be providing information but not recommending any particular course of action.
I think that having such a site might also be helpful to researchers, by giving them insights into the concerns and experiences of patients, and into how patients are attempting to cope with various issues.
I’d note that the Science of Parkinson’s Web site itself provides great insight into new advances, but does not specifically address this need for a place to pose questions inspired by patient attempts to cope, as such questions may more commonly involve quite old, and therefore usually more accessible, methods and substances, such as those referenced in the two example questions above.
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