“It is time for us to act more aggressively to end Parkinson’s”

Interviews

Author: Saskia MairPublished: 2 April 2020

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Parkinson’s is the world’s fastest growing brain disorder and charity Parkinson’s UK predicts that one in 37 people alive today will be diagnosed with the condition in their lifetime. In a new book, ‘Ending Parkinson’s Disease: A Prescription for Action’, four leading experts present a bold plan to “prevent, advocate, care and treat” the condition


How can we prevent the rise of Parkinson’s? It’s a question four leading researchers set out to answer in their new book, ‘Ending Parkinson’s Disease: A Prescription for Action’. Dr Ray Dorsey, Dr Todd Sherer, Dr Michael Okun and Dr Bastiaan Bloem, who have devoted their careers to studying Parkinson’s, now combine their experience and expertise to tell the story of the condition – and share how we can take action to end it.

What is ‘Ending Parkinson’s Disease’ about?

Dr Todd Sherer, CEO of the Michael J Fox Foundation: This book is about sharing what we, as scientists, know about what causes Parkinson’s and how we may treat it, so that the community can help us take action and find the next breakthrough.

Dr Michael Okun, professor and chair of neurology at the University of Florida, US: ‘Ending Parkinson’s Disease’ retells the stories of polio, HIV, breast cancer and points out the lessons learned in combating these diseases. We believe that collectively these lessons can help us to prevent, advocate, care and treat Parkinson’s.

Dr Bastiaan Bloem, professor of neurology and medical director at Radboud University Medical Centre, the Netherlands: We draw attention to the rapid rise in numbers of new patients with Parkinson’s, making this the fastest growing neurological condition on the planet. Our plan of action is to take measures to help prevent new people from developing the condition in the future, and to ascertain better treatments and care for the millions of people affected today.

Dr Michael Okun

What inspired you to come together and write a plan of action?

Dr Okun: We all passionately believe it is time for us to act more aggressively to end Parkinson’s disease. The cost of falls, fractures and nursing home placements will economically collapse most health care systems as the numbers of patients with Parkinson’s continues to skyrocket. We need to act now and change the trajectory.

Dr Bloem: All we have to offer today is symptomatic relief, and this is only partially effective and only for a limited period of time. Much better symptomatic treatments are needed, and we urgently need new approaches to slow down or arrest the relentless progression of Parkinson’s.

Dr Ray Dorsey, professor of neurology at the University of Rochester, US: If we do not act, many of us will spend the last 15-plus years of our life with a debilitating disease, or caring for someone with it.

Dr Sherer: I hear from patients and families about the challenges navigating Parkinson’s. But I also see first-hand the incredible advances we’ve made. This progress wouldn’t be possible without an engaged and informed community working alongside scientists and policymakers to end Parkinson’s. This book lays out opportunities for more people to play a role in helping improve care, prevent the disease and speed a cure.

Dr Bastiaan Bloem

Do you think enough people are aware of the condition?

Dr Bloem: Many still think that Parkinson’s is synonymous with tremor, but it is in fact very multifaceted and complex, and has such has a huge impact on the quality of life of patients and their families.

Dr Sherer: In the last decade alone, I’ve seen a jump in awareness. But today, there are still many stigmas and misconceptions about what the condition is, what causes it, what treatments are available and when we’ll find a cure. As the population of people with Parkinson’s grows –alongside the number of families impacted by it – we’ll need more education and resources to increase awareness of the condition and engagement around how we’ll eradicate it.

Dr Okun: We have been humbled that the education and awareness of what Parkinson’s disease is (and is not) has been woefully inadequate. We need to do a better job educating the public.

Why is the book a must-read for all?

Dr Dorsey: Almost everyone over 50 knows or will know someone affected by Parkinson’s disease. It is the world’s fastest growing brain disorder and absent change, the number affected will double by 2040. HIV activists created the slogan, “Silence=Death”.  For Parkinson’s disease, “Silence=Suffering”. We need to end our silence.

Dr Okun: Our book offers a deeper appreciation of why we need to act before millions of additional people become debilitated, and before the burden overcomes our healthcare systems.

Dr Bloem: Readers need to be aware, in order to prevent themselves from exposure to toxic chemicals, and also to adopt a healthier lifestyle. All these issues are addressed in the book.

Dr Ray Dorsey

Why is it important that we close the gap between researchers and the Parkinson’s community? How can we achieve this?

Dr Okun: We currently have thousands of research trials which need patients to complete recruitment. We will not be able to move the field forward with any sense of urgency unless we create meaningful partnerships. The patients and family members are my friends and I walk the road everyday with them. I know that time matters to them and that is why I am working as fast as I can to affect change.

Dr Sherer: We need to bring patients themselves into the research. They should have a seat at the table, because they’re the experts on living with the disease. It is only through their participation in studies that we can learn more about Parkinson’s and how we’ll stop it.

Dr Bloem: We need to be continuously informing patients, because this will help to alleviate anxiety and facilitate patients and their families in self-management.

Dr Todd Sherer

What changes do you hope to see in the future?

Dr Bloem: We should move away from physician centred care and move towards true personalised care, with an informed patient at the helm. We should also stop thinking that Parkinson’s is one single disease. There are multiple causes, but more importantly, each individual patient has his or her unique personal wishes and needs. The great challenge that lies ahead of us is to tailor all our services to these individual priorities, allowing patients to lead a meaningful life for many more years.

Dr Sherer: We still have many gaps of knowledge to fill, including establishing a biomarker of Parkinson’s. This objective test would help us diagnose and track the progression of Parkinson’s and would accelerate therapeutic development.

Unsurprisingly, the question I hear most often is: “How close are we to a cure?” And I tell our community that we are turning the corner on finding a way to either slow or stop the progression of the disease. The clinical pipeline of potential treatments is exploding, and I’m optimistic that a cure is within reach.

The field of Parkinson’s research is nearly unrecognisable to what it was 20 years ago. Real and tangible progress has been made, but there’s still much work to be done. But I see this less as a challenge and more as an opportunity. There’s no single right way to end Parkinson’s, and it’s going to take all of us working together to get there.

Ending Parkinson’s Disease: A Prescription for Action’ (£20, PublicAffairs) will be published on 16th April. Find out more about the book here.

Image Credit: Ending Parkinson’s Disease: A Prescription for Action

For more information about Parkinson’s, please visit the EPDA website.


Read more:

John Stapleton: “More Parkinson’s research is needed, full stop ”

Neurological disorders – including Parkinson’s – are leading source of disability globally

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