“We know so much about Parkinson’s, but so little about people with Parkinson’s”
Author: Sophie BatesPublished: 30 April 2020
Prep: Cook: Serves:
‘Brain Fables’ aims to overhaul how we think about Parkinson’s – and suggests that it’s time to stop treating it as a single condition. We talk to the authors, Benjamin Stecher, who has young onset Parkinson’s, and Dr Alberto Espay, a professor of neurology, about the lessons learned from the research ‘failures’ that have been made so far, and why it’s crucial for scientists to find out more about individuals with Parkinson’s
Tells us about ‘Brain Fables’.
Dr Alberto Espay, professor of neurology: This book approaches neurodegenerative conditions in a way that has never been done before. We know so much about Parkinson’s, but so little about people with Parkinson’s. If we let the data speak, we would see that the current models we have created for Parkinson’s apply to virtually no one, and maybe that’s why every clinical trial aimed to slow the condition has failed. The main message is that unless we change the way we think and approach brain ageing conditions, we will continue to have failure after failure.
We view this book as an opportunity to have a frank discussion about what we know – but more importantly about what we think we know but don’t. We don’t want to remove hope, we want hope to be based on rational elements.
Benjamin Stecher, Parkinson’s advocate and consultant: ‘Brain Fables’ is like a ‘choose your own adventure’ because we’ve worked on our own elements and brought them together. My narrative brings the perspective of someone with Parkinson’s, and also the opinions of researchers that I’ve been in contact with, while Alberto brings in the science behind the arguments and his perspective as a researcher.
Each chapter is a journey of our individual research and experiences that led to our conclusions. Our stories complement one another because there are parts that build on each other and then there’s the overlapping narratives. Some may only want to read the research perspective, others the patient’s point of view and some might choose to read both.
How did the idea for ‘Brain Fables’ come about?
Benjamin: Alberto and I first began to communicate in January 2019, when I reached out to him for an interview on my website, Tomorrow Editionand found that his ideas about Parkinson’s resonated with me deeply. A lot of the conclusions he had reached were similar to my own, so we went from there.
Alberto: The original name for the book was going to be ‘Brain Fictions’, because of the idea that the narrative that has been created around Parkinson’s doesn’t hold true when you look at the data – so from a biological perspective it’s fictional.
Who is ‘Brain Fables’ aimed at?
Alberto: This book is aimed at anyone who is interested in brain ageing and what is being done to combat the symptoms of it as we delve into Parkinson’s and Alzheimer’s . We hope this will be of interest to foundations, the government and industries of health in the US – as they are the ones that invest in research into Parkinson’s.
What message do you hope readers will take away from ‘Brain Fables’?
Alberto: We are probably not going to be able to change the research process until there is enough outrage from the outside. People need to ask why they are investing in research that is not heading anywhere. This book hopes to, in many ways, shock people outside of neurology, as current research is either inconsistent, or if it is consistent it reflects on common ends of the process, not what is relevant to each individual. If we conduct a study with 100 people with Parkinson’s, we report on the averages as a way of understanding – but that means we know next to nothing about individuals with Parkinson’s.
This book is all about evidence and how this evidence conflicts with our concepts, definitions and boundaries for Parkinson’s. Unless we tackle this societally, we’re not going to get close to the precision of medicine that other fields have already accomplished.
We need to start considering the possibility that there will never be a cure for Parkinson’s but there will eventually be cures for well-defined sub types of Parkinson’s.
Benjamin: What we’re proposing is not a quick fix, it’s very much a long-term solution.
‘Brain Fables’ is set to be released inspring 2020. Find out more here.
Need to know
Benjamin Stecher is a Parkinson’s advocate and consultant for academia and industry based in Toronto, Canada. Since his Parkinson’s diagnosis at the age of 29, he has spent his time travelling the world to discover more about the condition and launched his website ‘Tomorrow Edition’.
Alberto Espay is a professor of neurology based in Ohio, United States. He is an advocate of precision medicine in neurodegenerative diseases.
To find out more about Parkinson’s research, please visit the EPDA website.
John McLean: Parkinson’s has exposed me to new painting techniques
The abstract painter tells us about his Cure3 Exhibition art
3 days ago
Diesel exhaust fumes may increase the risk of Parkinson’s, study suggests
A new study by researchers in the US has found evidence that chemicals in diesel exhaust fumes can damage brain cells – and potentially increase the risk of Parkinson’s. As part of the study – published in ‘Toxicological Sciences’ – researchers tested the effects of diesel exhaust fumes on zebrafish, as their neurons interact in a similar way to those of humans. The researchers found that after being exposed to the chemicals, the zebrafish had fewer cells that dispose of toxic build-up of the protein alpha-synuclein, which occurs in Parkinson’s. The researchers replicated the experiment with cultured human cells and found similar results. Dr Jeff Bronstein, a professor of neurology at the University of California, Los Angeles (UCLA), US, said: “Overall, this report shows a plausible mechanism of why air pollution may increase the risk of Parkinson’s disease.”
Can Covid-19 increase the risk of developing Parkinson’s?
Parkinson’s could be caused or modulated by infections like Covid-19, a new study suggests – though more evidence is needed to draw a definitive conclusion. As part of the study, researchers from the Federal University of São Paulo, Brazil, drew on previous findings to support their hypothesis. For example, studies in mice have found that infection with some strains of influenza could cause neural changes similar to those in Parkinson’s. Furthermore, people born during or around the 1918 influenza pandemic were over twice as likely to develop Parkinson’s than those born in the decades before or after. Patrik Brundin, co-editor-in-chief of the Journal of Parkinson’s Disease, said that while it’s “too early to know what the long-term consequences of Covid-19 will be on the brain, the clinical psychiatry and neurology research communities definitely need to be vigilant in monitoring how those who recover from moderate and severe Covid-19 fare in…
New Parkinson’s trial platform could “dramatically speed up the search for a cure”
Scientists have proposed the use of a multi-arm, multi-stage trial platform (MAMS) to assess different potential treatments for Parkinson’s and help progress the search for a cure. This would depart from conventional clinical procedures, allowing several potential treatments to be assessed simultaneously. In a continuous process, each treatment ‘arm’ is evaluated and unsuccessful ‘arms’ of the trial are dropped, enabling a far more cost and time efficient system. Currently, MAMS are used to evaluate treatments for certain types of cancer – and work is underway to develop MAMS for other neurodegenerative conditions. Camille Buchholz Carroll, associate professor at the University of Plymouth, UK, and study author, said that MAMS trials could “dramatically speed up the search for a cure”. She said: “We have the opportunity to learn from the experience in these other conditions and design a new trial that will work for people with Parkinson’s.”