The fight against Parkinson’s Disease is at the centre of a new book ‘Ending Parkinson’s Disease: A Prescription for Action’.
Co-authored by Ray Dorsey, professor of neurology and director of the center for human therapeutics at the University of Rochester Medical Center; Todd Sherer, chief executive officer of the Michael J Fox Foundation for Parkinson’s Research; Michael Okun, chair and professor of neurology at the University of Florida and Bastiaan Bloem, professor of neurology and director of centre of expertise for Parkinson and movement disorders at Radboud University Medical Centre in the Netherlands, the book is a call to action to prevent Parkinson’s and improve care and treatment.
Parkinson’s Disease (PD) is a chronic, neurodegenerative disorder that impacts movement. There are treatments to relieve symptoms but there is no cure. EndingPD.org says PD is the fastest growing neurological disorder in the world and that between 1990 to 2015 the number of people diagnosed with PD doubled from 2.6 million to 6.3 million worldwide.
Dr Dorsey says: “We have been far too quiet about the disability and death that brain diseases are causing. HIV activists adopted a motto of ‘Silence=Death’. For Parkinson’s and many brain diseases ‘Silence=Suffering’, needless and preventable suffering.
“At the same time the number of Americans with Parkinson’s has increased by 30 per cent, funding from the US National Institutes of Health, adjusted for inflation, has actually decreased. What is worse, only around two per cent of research funding is aimed at preventing a largely preventable disease.”
The book calls for preventing PD, advocating for protective policies, care for patients and treatment through innovative therapies.
Ray Dorsey
Dr Dorsey explains how they came to write Ending Parkinson’s.
“At a bicentennial celebration of Dr James Parkinson’s original description of the disease that now bears his name, Dr Bloem and I gave a talk highlighting the dreadful rise of the disease,” he says. “We then wrote a piece, with great input from Dr Michael Okun on the Parkinson Pandemic that resonated with the community.
“With input from Dr Todd Sherer, who conducted pioneering research linking pesticide exposure to Parkinson’s, we set out on our journey to write the book.”
That link between pesticides and PD is discussed in Ending Parkinson’s Disease. Dr Dorsey says: “In the book we argue that Parkinson’s is largely a man-made disease.
“Since Dr Parkinson’s description at the height of the Industrial Revolution, numerous products and by-products of the Industrial Revolution, including air pollution, certain pesticides and industrial chemicals like trichloroethylene (TCE) have all been linked to PD.
“These toxicants are likely fuelling the rise of PD in the UK, US and around the world.”
Dr Dorsey believes the link between pesticides and PD needs to be more recognised. He says: “The link is not taken seriously enough.
“It is akin to what the tobacco companies did with smoking until Dr Richard Doll and Sir Bradford Hill in the UK established the link between smoking and lung cancer in British physicians.
“This deliberate production of ignorance and doubt for commercial gain needs to stop. More research is not needed. More action is needed.”
In terms of improving care for patients, Dr Dorsey is a huge advocate of telemedicine – the use of video or phone appointments between a patient and their health care practitioner.
He explains: “It is kind of odd that we generally ask sick patients to see healthy clinicians on our terms. It should be the opposite.
“We should bring care to patients, not patients to care. Telemedicine allows that to happen.”
While 200 people are diagnosed with Parkinson’s every day and 100 people die of the disease every day, Dr Dorsey believes the greatest cause for hope, and the biggest impetus for action, is that it is largely preventable.
He says: “In the 1930s, members of society heeded a call from US President Franklin Roosevelt, launched a March of Dimes and raised funds to prevent polio. Sixteen years later we had a vaccine for polio and we now live in a world largely free of polio.
“In the 1980s, marginalised individuals found their voice in the absence of a federal response to an unknown, fatal virus and changed the course of HIV and made it preventable and treatable.
“At the same time, a group of mothers mourning the loss of their children got mad and made drinking and driving unacceptable.
“Many of us are alive today because of their efforts. If we do the same for Parkinson’s disease, motor neurone disease, Alzheimer’s and many others, we can create a world where these diseases are increasingly rare, not common.”
Ending Parkinson’s Disease is available to buy online or in bookshops and libraries.
Dr Dorsey says: “If anyone cannot afford a copy and would like one, email your postal address to info@endingPD.org and we will send a copy. If you have a story to share or want to help our efforts, please email us too.”
