In this week’s episode of Movers and Shakers we meet a man with a mission which will be music to the ears of anyone living with Parkinson’s:
“It may sound melodramatic, but I'm dead serious,” Bas Bloem tells us. “I want to make myself unemployed because Parkinson's is no longer existing.”
If there is such a thing as a rockstar neurologist, Professor Bastian Bloem of Nijmegen’s Radboud University Medical Centre in the Netherlands fits the bill. He is a giant figure in the world of Parkinson’s treatment and research - quite literally as he is 6 foot 7 - and, rather unusually, also a great communicator who has an optimistic view of the battle against the. world’s fastest growing neurological condition.
So we were delighted when he accepted our invitation to join us in the pub to discuss his career, his theories on the causes of Parkinson’s and his view of our Parky Charter.
Bas explained that at first his medical career was focused on beating another neurological condition:“My mother had multiple sclerosis, so my dream as a young boy, and the reason I'm so passionate is I wanted to cure my mum. So my parents literally said ‘your first word was Mama, your second word was Papa, your third word was neurologist.’”
But a placement early in his career with a top Parkinson’s specialist in California set him on a different course. He became fascinated by a condition that was so complex, with such a range of symptoms that no two patients looked alike:
“I think there are 12 million Parkinson's diseases in the world, as many as there are individuals with Parkinson's.”
Now in his late 50s, Bas Bloem has become increasingly convinced that environmental factors are a key cause of Parkinson’s. He says that there had been little mention of the disease before 1817 when James Parkinson described its symptoms in London “at the time when the Industrial Revolution was taking place and air pollution was taking grotesque forms.”
In the book Ending Parkinson’s Disease, which he co-authored with a number of neurologists, there is a call for a worldwide ban on pesticides such as Paraquat which have been linked to Parkinson’s:
“There is no doubt to my mind that pesticides that we have used in the past are a cause of Parkinson's,” he says. “If I'm a nuanced researcher, which I try to be, we don't know whether any of the currently used pesticides in Europe are the cause of Parkinson's.” But I put it to him that if the link is so clear, you might expect the percentage of the population getting the disease to be flattening or coming down as the use of such pesticides gets lower.
And looking round the table at my fellow Movers and Shakers who have spent their careers in the media or the law courts rather than in the fields, it is hard to see how we have been exposed to pesticides. Bas insists that the figures do show a higher incidence of Parkinson’s amongst agricultural workers, and says around the world pesticide use is still rising.
When we come to discuss our Parky Charter and its call for more neurologists, we are soon green with envy when we ask how long it takes to see a neurologist for a Parkinson’s diagnosis in the Netherlands:
“I do admit we have 900 neurologists and a population of 17 million, much better than here in England.” (I’ve looked up the numbers for NHS England and we have around 1600 neurolologists for 57 million people.)
That means that the Dutch wait for between 6 and 12 weeks for an appointment whereas here even the accepted standard wait is 18 weeks and we have heard of plenty of people waiting a year or more.
But the Netherlands also seems to be using its 900 neurologist more efficiently. Once Bas has seen someone for initial diagnosis - and he stresses that doctors everywhere need to be better at breaking the bad news - there is not an automatic scheduling of a follow up appointment:
“What I tell people in my clinic is, we will not make a follow up consultation. Ring me up when you think it is time you need me,” he says, explaining that patients can be trusted to know when they need to see the doctor. “If I leave it to you to decide when you come, you will come precisely on time. And if I don't clog my consultations with routine follow ups, there will be room for you to come on time. And research has shown that people actually come less often and exactly on time.”
One of the reasons this seems to work is that the Netherlands has gone much further down the path to providing the holistic care we call for in the charter. People from 19 different disciplines, from physiotherapists to nurses and speech therapists, have been trained to specialise in Parkinson’s but also to collaborate so that they can pass a patient to the most appropriate specialist.
“It's all about making the most out of the limited resources, self management, and professionals dedicated to Parkinson's who work effectively as a team.”
While Bas stresses that the health system in the Netherlands is facing the same challenges as anywhere else of treating more elderly people with a workforce pushed to the limit, it sounds as though whoever is in charge of the NHS Parkinson’s strategy (surely there is someone?) needs to head over to Nijmegen to see what lessons can be learned.
We end by getting Bas to look forward and predict what can be achieved by the thousands of researchers trying to solve the Parkinson’s riddle. He. wants more emphasis on what’s called the prodromal stage of Parkinson’s, the period of up to 30 years before the time when its symptoms become apparent:
“It's a long lead up phase, and then there are more healthy neurons to protect. So the the odds of a cure are much higher for the prodromal people compared to people who already have the disease, because by that time, 70% of your dopaminergic neurons are dead.”
That is not much use to those of us already well down the road to dopamine destruction so what can Bas offer us in our lifetimes?
“I'll be honest and realistic with you. I think a cure will take a long time, but I think a disease modifying treatment that will slow down progression is within reach.”
And he ends with this: “I am the unofficial carrier of a mutation in the gene for optimism.”
We head to the bar feeling that we now understand the placebo effect - 30 minutes with the enthusiastic, effervescent and energetic professor from Nijmegen have left us feeling as though a miracle drug has been sent speeding direct to our brains.
Don’t forget you can find more information about each episode on our website at www.moversandshakerspodcast.com. And if you have comments or suggestions you can email us at feedback@moversandshakerspodcast.com.
Thank you so much for bringing Bas to Movers and Shakers! I have come across him quite a few times in the past, never in person although I feel as though I've really met him! Such a clever, lovely, funny man who is a best friend to all of us. And he wants to be invited back! Yes, please! And if you haven't read the book "Ending Parkinson's Disease" then I'd recommend that you put it on your Christmas list. It has several authors, is full of so much information. Thank you again.
Great podcast, as always. Love the energy though somewhat amused about the heli-skiing advert at the start: I’m struggling to think of an activity that I would find more challenging with Parkinson’s 😀⛷️🚁