Interviews of Ray Dorsey, MD!
It is the most talked about book this year on Parkinson’s Disease! A Prescription for Action, Ending Parkinson’s by Ray Dorsey MD, Todd Sherer PhD, Michael S. Okun MD and Bastiaan R. Bloem MD PhD, is thought provoking, honest and makes urgent demands of the Parkinson’s community to help to stop this condition. Parkinson’s Disease the fastest growing neurological disorder in the world and over the past 25 years the condition has risen from 3 million to 6 million. It is predicted that by 2040, the numbers will double again.
Elizabeth Gordon, Chief Executive of Parkinson’s Care and Support UK, speaks in depth to Ray Dorsey about the prevention of Parkinson’s and how the UK is contributing to the Parkinson’s pandemic.
E.G– Congratulations on the release of Ending Parkinson’s Disease. You, Michael Okun, Bastiaan Bloem and Todd Sherer have put together a great book for the Parkinson’s community. There are not many current Parkinson’s books out and yours really does deliver a completeness. It talks about the history and emergence of Parkinson’s Disease right up to the present day of how it is the fastest growing neurological condition in the world. What is fascinating is that it is a call to action for everyone to stop and think about the role they play in the emergence of Parkinson’s or better still how they can actively help to put a stop to the condition. We are talking about the onus being put on us and people saying ‘if I can do my bit, even if it’s something small, then I will.’
Whose idea was the book? There are 4 of you which have come together, obviously with different backgrounds and specialisms. How did it happen?
R.D– There was this great book called ‘Surviving a Pandemic’ by David France on the HIV activist and how they changed the course of the disease and how silence equals death. I was moved by the fact that a group of people who were directly affected by the disease changed the course of things. They would not go away
There was a World Without Parkinson’s event in New York in 2017 where Bas (Bastiaan Bloem) and I gave a talk. Following that event we wrote a paper called the Parkinson’s Pandemic. That paper resonated with the community. We talked to Todd Sherer and reached out to Michael Okun and decided to write a book. We wanted to focus on prevention and getting rid of disease so that no one ever has to have it. If you look at HIV, the majority ofpeople do not have it. Why is that? It’s down to prevention and education and because of advocacy. It was a huge motivating force.
E.G– How was it for the 4 of you to merge with all the different ideas and did you always agree on the content?
R.D– Bas has done a huge amount of work on care and so lead the section on care. Todd has done a lot of the earliest work at Emery on Pesticides and how they link to Parkinson’s and so that was his specialism there. Michael has done a lot of work on DBS and has written lots of books so you can see whose fingerprints have been left where. We all had different roles and an outstanding editor- Suzanna Meadows, which is very helpful in bringing it all together.
E.G– Do you have any personal connections with Parkinson’s?
R.D– I don’t think that prior to the book any of us had any connection with Parkinson’s. But whilst writing the book one of my uncle was diagnosed with the condition. I’ve always been interested in the brain and have worked and cared for people with Parkinson’s for several years.
E.G– What is your favourite part of the book or the part that you think to be most fundamental?
R.D– I think the most fundamental part is that we can prevent the disease. Parkinson’s Disease is preventable. Parkinson’s started in London in 1817 or at least large instances began there. The air pollution was phenomenal where people couldn’t see across the street. You would see people covering faces with masks just like they do in China, that’s how bad the air pollution was. The fastest growing place now with Parkinson’s is China. If you look at the curves with air pollution and Parkinson’s Disease, they look uncannily similar. We know that some of the pathology begins within the nose. We also know that Parkinson’s Disease is not an inevitable disease that happens with age. It is a preventable disease and we need to get around to preventing people from ever developing it in the first place.
E.G– This is the exact messaging that we have been trying to put through via our organisation. People need to be proactive, but most importantly they need to be educated so that they can take the relevant steps towards disease prevention.
Now, I’ve got to bring up country variations and of course responsibilities as there’s no denial that the challenges the USA faces are not the same as the UK. When we read the book we found that some of the arguments especially in relation to the prevention of Parkinson’s through the use of pesticides and industrial chemicals were particularly useful and relevant to the USA and not necessarily Europe where many of them have banned or are not being used. What would you say to people from Europe and in particular the UK who may say ‘We are OK in that department now, we’ve banned them!’? How would you make this just as relevant in UK?
R.D– We know that the book heavily references America, this is due to most of the authors being American. It does reference the pesticide Paraquat a lot, which is the pesticide most strongly linked to Parkinson’s Disease. Although the UK has banned the use of paraquat, it still produces it and ships it to us! You cannot think that just because you are not using it you are not responsible for the global rise in Parkinson’s Disease. You are. You are giving it to other people. You’re shipping it to Brazil, Mexico and India also. It contributes to Parkinson’s and are profiting on this.
There are a lot of Pesticides. Some are still out there, some are banned in certain countries, but the same countries are producing it and shipping it to across the world. The British like to think that they contribute to the global rise of democracy and free markets, but they contribute to the global rise of Parkinson’s.
E.G– You are really making some important statements here Ray and the situation is absolutely shameful. Everyone has a role to play. It is about people taking responsibility and collectively the various countries playing their part to stop this global rise of Parkinson’s. It really is a double-standard to confirm that a pesticide is toxic for your nations, but to then send the same killer-substance to other countries to use. Where is the humanity in that? What is worse, is that we then import the fruit, veg, soy and everything else produced with paraquat. It’s unbelievable.
In the book you have clearly set out the relation between farmers, the use of pesticides and Parkinson’s. What about the consumption of foods that have been produced with such pesticides? This is a concern for Parkinson’s Care and Support UK as research has shown numerous pesticides that cause health problems through food consumption. What is your take on this? How important do you think this to be?
R.D– We don’t know for sure as we don’t have great statistics in this area. I’ve changed my eating practices over the years, and I buy more organic produce. In Ending Parkinson’s Disease, we quote Dr Honglei Chen, who said he wouldn’t be surprised if people who consumed more fruit and veg with these pesticides had more instances of Parkinson’s. Dr Honglei Chen advises to ‘Minimise your consumption of pesticides.’ Simple. Adding to that, there was a study in the US that looked the consumption of pesticide Heptachlor through milk. It found that high drinkers of milk were more likely to have Parkinson’s. Many pesticides are nerve toxins that dissolve in fat. And the brain is a fatty substance. High drinkers of milk are more likely to develop Parkinson’s and when we looked at their brains,they had fewer dopamine producing nerve cells and traces of the pesticide there. They basically found the smoking gun right next to the dead nerve cells! What is even more crucial is that the only time you excrete these fat soluble pesticides that dissolve in your fat or in your brain is when you nurse. In pesticide exposure in certain parts of the world they would look at the breast milk of nursing mothers and would find levels of pesticides in them which were being passed on to babies who are then developing brains that may be more susceptible to and less protected to the effects of these pesticides
E.G– Incredible! Do you think that this could have any relevance at all to YOPD? Or do you think that is a totally different area? I ask this because there are extreme cases of Parkinson’s developing in children. We know of one person who has had the condition since age 7.
R.D– I don’t know. Most research suggests that cases of Parkinson’s developing over the age of 50 are due to environmental factors and under the age of 50 are influenced by genetics. However, almost all genetic factors have known interactions with pesticides. If you smoke cigarettes, you only have a 10% chance of developing lung cancer, but it doesn’t mean that smoking doesn’t cause lung factors, it means there are other factors that determine who among the smokers will get lung cancer. We highlighted in the book numerous people who had environmental exposures to various chemicals, trichloroethylene being one of them, who were diagnosed with YOPD. I think there is a clear association between exposure to chemicals at a young age leading to the development of Parkinson’s, with trichloroethene being the clearest. Trichloroethylene is an industrial solvent which causes huge indoor air pollution and a huge cause of ground water contamination. I think there are a large number of individuals who have YOPD who have had exposure to chemicals like trichloroethylene. They may not even be aware. This is preventable. Many countries have banned the use of trichloroethylene. The USA has not done so. Global use of trichloroethylene has grown 2% each year and in China 4% each year. Globally there is huge impact of this chemical on Parkinson’s Disease.
E.G– What can the UK do about trichloroethylene?
R.D– I don’t know what the UK level of exposure is. I know it’s found in industrial contaminated sites. Dry cleaners use these products. They have to dispose of these chemicals. How they do so is very important as dumping grounds contaminate ground water, it evaporates into the air and gets into homes.
E.G– As a charity that focuses on natural and alternative treatments and therapies, Parkinson’s Care and Support UK puts great emphasis on exercise and diet and how these can help to prevent Parkinson’s Disease. It was great to read this emphasis in your book. You’ve clearly stated that these have a direct impact on the risk of developing Parkinson’s and have used examples such as the Mediterranean Diet and drinking coffee which has been shown to reduce the risk of Parkinson’s. Do you know if it is the coffee itself or the caffeine?
R.D– It appears to be the caffeine as de-caffeinated coffee does not have the same result. There is countless research out there that supports the Mediterranean Diet and the protection it provides against developing Parkinson’s. This referenced in the book also.
E.G– Your area of specialism is telemedicine. How does that work for you and what are the advantages of this service, particularly for people with Parkinson’s?
R.D– This began in the 1990s. Jean Hopple was a neurologist in Kansas. She was having patients drive 3-4 hours for care, which is crazy. So, she set up video links so that patients could see her without the journey. We and the others have been using it since 2007. We think its odd that we ask sick patients to visit generally healthy clinicians on our terms. It should be the other way round. We think that generally healthy clinicians should see sick patients on their terms. The patient has more control. The 5 Cs are at the centre of this work: Care, comfort, convenience, confidentiality and reducing Contagions, which is very relevant with the current COVID-19 situation.
E.G– What works best for people with Parkinson’s and are there any drawbacks?
R.D– Yes, there are. The examination side of things are not so good. For example, its hard to determine stiffness and sometimes tremor. But on the other side I get to know you better as a person and see things I would not get to see in the clinic. Building a complete picture of the patient is extremely important when delivering care.
E.G– With you saying that, I will ask you for some advice. As you know, Parkinson’s Care and Support UK provides free home-based neurological physiotherapy for people with Parkinson’s and well as respite care. Since the coronavirus pandemic, we have significantly reduced the home-based physiotherapy service and have been delivering some of our treatments online. For the neuro-physio programme, we are often faced with people who cannot make it to our exercise classes due to mobility. They also tend to be older and as a consequence, the use of technology tends to be reduced. Health and safety has also been a concern especially when trying to deliver physiotherapy via video call to someone who is living alone. What is your take on this? How would you encourage us to move forward with these obstacles?
R.D– Firstly, all physiotherapy should be delivered in the home. It is a necessary part of care. If this is not possible, for example because of the COVID-19 situation, then the next best thing is via video call. No solution is to have the patient come to you. Yes, you may have a risk of falling and there will always be such a risk, but even driving to and from appointments pose risks of car accidents. I’ve done this for 13 years and I’ve never had a patient fall!
E.G– In regards, to exercise, what would you recommend to someone with YOPD and to someone who has developed Parkinson’s later in life?
R.D– As in the book– vigorous exercise in your 40s, 50s and 60s for 3.5-4 hours a day. Vigorous meaning you have to sweat! This can reduce Parkinson’s by 20%. It’s up to you what you do. As Michael Okun suggests, do what you like to do. The vast majority ofresearch shows that exercise not only helps people with the disease but also helps to prevent it.
E.G– In the book, you mentioned that proceeds from the sale of the book will go towards ending Parkinson’s Disease. You are interested in funding projects that contribute to ending Parkinson’s Disease, which is great. Parkinson’s Care and Support UK will be launching a new grants scheme in September, which will provide funding to seed funding projects and which will centred specifically on the prevention of Parkinson’s. If you had to allocate some money towards the prevention of Parkinson’s, where would you direct this money?
R.D– We are also funding work to prevent Parkinson’s from the proceeds of our book sales. People don’t want to be cured of Parkinson’s Disease, they want to never have it in the first place! They never want people to have it again! I never want to have HIV. I never want to have Cancer. We never have to worry about having Polio and that’s because 70 years ago, a group of ordinary citizens raised money to develop a vaccine to prevent people from developing the disease. We have no polio treatments, centres or advocacy groups as there’s no polio. We are focussing on the environment factors that are contributing to and causing Parkinson’s Disease so we can prevent people from ever developing it. We will have a strong focus on trichloroethylene. We feel that we can prevent thousands if not millions of people from ever developing Parkinson’s. If we can prevent thousands if not millions of people from developing Parkinson’s what a great legacy it would be for all organisations to collectively do that.
E.G– Most definitely, I agree. People are tired. Every few years they are being promised that cure for Parkinson’s is coming soon. Billions of pounds have been spent globally over the past 50 years and we are not near a cure. Parkinson’s Care and Support UK believes that prevention is just as good as a cure, if not better.
On a final note, I believe that each country should own a responsibility in terms of efforts made to end Parkinson’s Disease. I say this because it’s easy for some countries to say ‘this problem is not ours’ but it is, particularly when numbers are rising at therate they are and when there are steps that we can all be taking to reduce it. We need to acknowledge our contributions. What are we doing wrong? What do we have control over? Where can we make improvements? Once this is done then there will be a global decline in Parkinson’s.
R.D– Thank you Elizabeth. If there is anything we can do to help with your endeavours let us know. We want to start a movement, just like you.
How you can help to prevent Parkinson’s
A Prescription for Action, Ending Parkinson’s by Ray Dorsey MD, Todd Sherer PhD, Michael S. Okun MD and Bastiaan R. Bloem MD PhD, is on sale now and can be bought from Amazon here. Buy this book for a clear insight to the environmental factors that put us all at risk to developing Parkinson’s and 25 points of action that we need to take.
Sign up to the P.A.C.T
Join Parkinson’s Care and Support UK and others across the world and sign up to the P.A.C.T (Prevent, Advocate, Care for and Treat Parkinson’s)
Together we can end Parkinson’s.
Make a donation to the Preventing Parkinson’s Grant Fund
The Preventing Parkinson’s Grant Fund will provide funding towards research projects that are focussed on the prevention of Parkinson’s Disease. Applications will be accepted from September 2020. For more information, email firstname.lastname@example.org