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.
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 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?
Determining exactly how many individuals there are in the world that are affected by Parkinson’s is a difficult task. Previously, a lot of ‘gues-stimation’ has been used in these quantitative efforts. But a clearer idea of the geographical, national and regional spread of Parkinson’s burden, could provide us with very useful information to help better understand the condition.
The Global Burden Disease Collaborators conducted a world-wide assessment of Parkinson’s burden in 2016, and this week the results of their study were published. The findings make for interesting reading.
In today’s post, we will review the results and discuss what they mean for the Parkinson’s community.
This is one of those classic ‘boy meets girl’ stories… but with a ‘saves the world’-kind of twist to it.
Having just graduated from Duke University (with a degree in computer science and economics) in the summer of 1986, Melinda Ann French began working as an intern for IBM. Having learnt to program (in Basic) on Apple II computers during her teens, she was interested in a future career in the developing world of computer technology.
She eventually scored a job with a new company called Microsoft, and for the next 6 years she climbed the corporate ladder, from a software marketing position to general manager of information products (such as Microsoft Bob, Expedia, and Encarta).
Melinda met William (Bill) Henry Gates III four months after starting her job at Microsoft – they happened to sit next to each other at a trade-fair dinner in New York. But several months would pass by before Bill actually asked her out on a date.
They were married in Hawaii on New Years day 1994.
In 2000, the couple launched the Bill and Melinda Gates Foundation – which has gone on to become one of the largest private foundations in the world with US$50+ billion in assets.
Excuse me, this is all very interesting, but what does it have to do with Parkinson’s?
The motor features of Parkinson’s disease can be managed with treatments that replace the chemical dopamine in the brain.
While there are many medically approved dopamine replacement drugs available for people affected by Parkinson’s disease, there also are more natural sources.
In today’s post we will look at the science and discuss the research supporting one of the most potent natural source for dopamine replacement treatment: Mucuna pruriens
When asked by colleagues and friends what is my ‘plan B’ (that is, if the career in academia does not play out – which is highly probable I might add – Click here to read more about the disastrous state of biomedical research careers), I answer that I have often considered throwing it all in and setting up a not-for-profit, non-governmental organisation to grow plantations of a tropical legume in strategic places around the world, which would provide the third-world with a cheap source of levodopa – the main treatment in the fight against Parkinson’s disease.
Plan B: A legume plantation. Source: Tropicalforages
The response to my answer is generally one of silent wonder – that is: me silently wondering if they think I’m crazy, and them silently wondering what on earth I’m talking about.
As romantic as the concept sounds, there is an element of truth to my Plan B idea.
I have read many news stories and journal articles about the lack of treatment options for those people with Parkinson’s disease living in the developing world.
Hospital facilities in the rural Africa. Source: ParkinsonsLife
Some of the research articles on this topic provide a terribly stark image of the contrast between people suffering from Parkinson’s disease in the developing world versus the modernised world. A fantastic example of this research is the work being done by the dedicated researchers at the Parkinson Institute in Milan (Italy), who have been conducting the “Parkinson’s disease in Africa collaboration project”.
The researchers at the Parkinson Institute in Milan. Source: Parkinson Institute
The project is an assessment of the socio-demographic, epidemiological, clinical features and genetic causes of Parkinson’s disease in people attending the neurology out-patients clinic of the Korle Bu Teaching and Comboni hospitals. Their work has resulted in several really interesting research reports, such as this one:
Title: The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa.
Authors: Cilia R, Akpalu A, Sarfo FS, Cham M, Amboni M, Cereda E, Fabbri M, Adjei P, Akassi J, Bonetti A, Pezzoli G.
Journal: Brain. 2014 Oct;137(Pt 10):2731-42.
PMID: 25034897 (This article is OPEN ACCESS if you would like to read it)
In this study, the researchers collected data in Ghana between December 2008 and November 2012, and each subject was followed-up for at least 6 months after the initiation of Levodopa therapy. In total, 91 Ghanaians were diagnosed with Parkinson’s disease (58 males, average age at onset 60 ± 11 years), and they were compared to 2282 Italian people with Parkinson’s disease who were recruited during the same period. In long-term follow up, 32 Ghanaians with Parkinson’s disease were assessed (with an average follow period of 2.6 years).
There are some interesting details in the results of the study, such as:
- Although Levodopa therapy was generally delayed – due to availability and affordability – in Ghana (average disease duration before Levodopa treatment was 4.2 years in Ghana versus just 2.4 years in Italy), the actual disease duration – as determined by the occurrence of motor fluctuations and the onset of dyskinesias – was similar in the two populations.
- The motor fluctuations were similar in the two populations, with a slightly lower risk of dyskinesias in Ghanaians.
- Levodopa daily doses were higher in Italians, but this difference was no longer significant after adjusting for body weight.
- Ghanaian Parkinson’s sufferers who developed dyskinesias were younger at onset than those who did not.
Reading these sorts of research reports, I am often left baffled by the modern business world’s approach to medicine. I am also left wondering how an individual’s experience of Parkinson’s disease in some of these developing nations would be improved if a cheap alternative to the dopamine replacement therapies was available.
Are any cheap alternatives available?