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Background Information

Bastiaan (Bas) R. Bloem, M.D., Ph.D., is a neurologist and the founder and director of the Center of Expertise for Parkinson & Movement Disorders at the Radboud University Medical Centre, Nijmegen, The Netherlands. He established the Center in 2002 and it is recognized as a center of excellence for Parkinson’s disease (PD) by the Parkinson’s Foundation. He also holds the position of professor of neurology at Radbound, with a special interest in movement disorders.

Dr. Bloem received his medical degree (with honors) at Leiden University Medical Centre (LUMC) in 1993 and obtained his PhD in 1994. He trained as a neurologist at LUMC from 1994 to 2000 and received additional training as a movement disorders specialist during subsequent fellowships at The Parkinson’s Institute, Sunnyvale, California, and the Institute of Neurology, Queen Square, London, UK.

He serves on the editorial boards of several national and international scholarly journals and has over 700 publications, including more than 600 peer-reviewed international papers.

Along with Marten Munneke, he developed ParkinsonNet, an innovative healthcare concept that now consists of 70 professional regional networks for PD patients throughout The Netherlands. Because of the evidence-based quality improvement and significant cost reduction, ParkinsonNet has received multiple awards, including the Value-Based Health Care Prize.

Throughout his distinguished career, Dr. Bloem has served in many leadership roles. He is past president of the International Society for Gait and Postural Research. From 2009-2012, he was a member of the European Section Executive Committee of the Movement Disorder Society (MDS), from 2013-2017, a member of the International Executive Committee of the MDS and is currently secretary of the MDS. Since 2017, he has served on the Executive Scientific Advisory Board of The Michael J. Fox Foundation for Parkinson’s Research.

Among many honors Dr. Bloem has received are the 2018 election as a member of the Koninklijke Hollandsche Maatschappij der Wetenschappen (the Royal Holland Society of Sciences and Humanities), the oldest scientific society in the Netherlands; the 2018 Tom Isaacs award in recognition of his longstanding achievements in PD; and his election in 2019 as Fellow of the Royal College of Physicians of Edinburgh, Scotland.

Dr. Bloem has three main research interests: clinical presentation of falls and axial motor disability in neurodegenerative disorders; cerebral compensatory mechanisms, especially in the field of gait and balance; and healthcare innovation, aiming to develop and scientifically evaluate patient-centered collaborative care.

Five Questions

How did you decide to become a neurologist, and especially a movement disorder specialist?

The reason I became a neurologist is that my mother was living with multiple sclerosis, which she was diagnosed with in childhood. As long as I can remember, my mother was sick and eventually wheelchair bound, and being treated with chemotherapy, which was sort of an experimental treatment for multiple sclerosis at the time. It was my boyhood dream to one day cure my mother, so I wanted to become a neurologist all my life. During my third year of medical school, I decided to try and do some research in the United States, in order to boost my career and increase the likelihood of being accepted into a neurology residency.

When I asked Professor Onno Buruma, who was my superior at the time, for opportunities to go to the States, it just so happened that Dr. Bill Langston was going to give a lecture that very week at the university where I was trained (Leiden). Buruma made the introduction; Bill Langston was immediately interested and invited me.

Bill was, of course, famous for his discovery of MPTP-induced Parkinsonism; and although this was not multiple sclerosis, the idea of working with this celebrity who also happened to work in California was of course massively attractive. I managed to raise some funds and ended up working in Bill’s Parkinson’s Institute on two occasions, first for nine months, and about a year later for another three months.

Ever since I first encountered people living with Parkinson’s disease I have been impressed with the complexity and tremendous impact of their disease, but also by the resilience of patients and their families. I decided to dedicate my life to improving the lives of people with Parkinson’s disease. Bill Langston was obviously also a wonderful and inspiring mentor, and so was the fantastic team he was working with, which included brilliant clinicians and scientists such as Carlie Tanner, Jim Tetrud, Dino Di Monte and Ian Irwin. It is wonderful that I still have good contacts with many people from that time, including Bill, Jim and Carlie.

I also had the pleasure of working with Dr Dennis Beckley at the VA in Martinez, who was a wonderful neurologist and neurophysiologist with great expertise in both Parkinson’s disease and balance responses. Dennis soon became not just a colleague, but also one of my best friends, and our friendship continues until today.

My work at the Parkinson’s Institute earned me a Ph.D (which focused on postural responses in people living with Parkinson’s disease, including some tests and the famous patients with MPTP-induced Parkinsonism). Following my residency in Leiden, I moved to the Radboud University Medical Centre in Nijmegen, where I could become the successor of Dr. Martin Horstink, who was a well-respected movement disorder specialist there. We worked briefly together until Martin retired, and he unfortunately passed away not too long after. The Centre of Expertise for Parkinson & Movement Disorders that I now lead was in many ways originally founded by the late Martin Horstink, and we all still cherish precious memories of his invaluable contributiona to our group.

What are the more significant challenges for treating patients who have Parkinson’s, and how do we best meet these challenges?

One of the greatest challenges, of course, is that we cannot cure the disease; we cannot slow down the disease let alone stop its progression. So all we can do is offer symptomatic treatment. We are fairly successful at alleviating symptoms and signs and improving quality of life in the initial years of the disease, but the challenges become progressively difficult as the disease continues. My own Ph.D work, for example, showed that postural instability and falls are generally very difficult to treat with medication, which actually motivated me to look more at nonpharmacological interventions. This is still a cornerstone of my current work.

Another tremendous challenge is really to stop seeing patients as the objects of well-intended actions, but instead as full and respected members of the medical management team. We should learn to organize care together with patients, instead of delivering care to patients. Terms such as “the patient as partner” (or perhaps better even: the doctor as partner) and “participatory health” come straight from my heart. The same holds true for science, where patients should also be seen as partners who can help design projects, think about protocols, and make sure that results are properly implemented into daily clinical practice – here a favorite term is participatory science.

What gives you hope with respect to better Parkinson’s treatments and outcomes?

I think it is a time of hope for people living with Parkinson’s disease, and for their families and friends. We are beginning to understand better and better what is happening in the brain, and how these insights into the pathophysiology may lead to treatments that can one day help to slow down the progression of the disease, and perhaps even stop it from progressing. If shown to be successful during the symptomatic phase, the same treatments—when delivered to presently asymptomatic people who are at risk of developing Parkinson’s disease—could potentially help to postpone manifestation of the disease or even prevent it from becoming manifest altogether.

Many promising compounds are on the brink of being tested in clinical trials; although we have to be realistic, because many previous attempts have failed despite promising preclinical work. At the same time, we are getting much better at supporting people leading a meaningful life, despite having Parkinson’s disease.

Deep brain stimulation and other advanced treatments are now well-established interventions for people in a more complex phase of the disease. Other new interventions are being tested, and I have good hopes that colleagues such as Professor Roger Barker and others will soon create an evidence basis for stem cell therapies.

Another important development is the growing recognition about the importance of multidisciplinary care, again with the patient at the core as the star of the team. Optimal Parkinson care is so much more than just pharmacotherapy or surgical interventions, and should include a wide range of nonpharmacological interventions. There is now good evidence for physiotherapy, occupational therapy and speech-language therapy, and we are building new evidence for other interventions, such as the role of Parkinson nurses (we strongly believe that they are extremely important, but the formal evidence is still thin), but also more innovative approaches such as gaming interventions.

I’m very proud that, together with a wonderful group of people, I have been involved in the development and implementation of the ParkinsonNet concept. This is essentially an approach with several cornerstones. A selected group of professionals is thoroughly trained to deliver optimal care, according to evidence-based guidelines; the selected well-trained professionals attract large numbers of people living with Parkinson’s disease, so they can apply their knowledge in daily practice and gain cumulative experience in the field; improved collaboration occurs between professionals from different disciplines, but also between medical professionals and patients; and patients are empowered by bringing knowledge to patients, with the assumption that a well-informed patient is happier, healthier, and better able to self-manage.

Our research has shown that this ParkinsonNet approach leads to better care and fewer disease complications at substantially lower costs for society.

Finally, I am very pleased to see that there is a move towards bringing Parkinson care literally back home. In-person visits in the hospital are important to establish a diagnosis based on a carefully performed neurological examination, and are also important to build up an intimate patient-doctor relationship. However, once the diagnosis has been established and that personal relationship has been built up, many of the routine follow-up issues can be dealt with remotely, using a variety of telemedicine approaches, including videoconferencing but also simple telephone calls.

If needed, we should go to the patient’s house, instead of asking patients to come to the hospital, because the hospital is the perfect place to get the wrong impression about the patient’s functioning. The current COVID-19 crisis is of course horrible, particularly for those living with Parkinson’s disease, but it has a silver lining in that it has accelerated the introduction of telemedicine approaches. Reimbursement is now better security in many places, and we have gained experience as to what can be done using telemedicine, and what is still better achieved by asking patients to come to the hospital.

What has surprised you most about working with those who have Parkinson’s?

It has been the ability of persons living with Parkinson’s to compensate for their disease. It all started with my well-known observation of a man living with Parkinson’s, who was grounded by severe freezing of gait, but who was still able to ride a bicycle. That observation was videotaped and subsequently published in The New England Journal of Medicine; and the story eventually made it to the front page of The New York Times. It really alerted me to the fact that it is possible to bypass the defective basal ganglia, and that carefully listening to patients is a wonderful way of identifying unique strategies that people have often discovered themselves to compensate for the loss of automaticity caused by basal ganglia dysfunction.

We now have an incredibly rich collection of self-discovered compensation strategies, which we are now giving back to patients in a systematic fashion. But the resilience goes beyond simple compensation for motor deficits. Other persons compensate by producing magnificent art, such as making paintings, writing books, or producing music. Humor is also an important compensatory strategy. All these creative solutions continue to surprise me every day, making the people living with this disease the true muse in my life and work.

What wisdom would you offer someone wanting to know how best to live with this disease?

I am not sure if there is a single offer of wisdom, but some recommendations may help the many people living with Parkinson’s around the globe:

  • Try to exercise on a daily basis, it has both symptomatic effects and can perhaps slow down the progression of the disease.
  • Don’t be too scared of medication, the side effects that may appear over time are largely the result of the underlying progression of the disease, and medication can help to improve the quality of your life. If you are better treated, you can also engage in exercise more readily.
  • Make sure that your physician and the other members of your medical team regard you as a partner, not as an object. Make sure you are well informed about the disease, but particularly about your own priorities.
  • Whenever you go see a physician or another healthcare professional, make sure that you have one top priority that you wish to see addressed. Asking your physician multiple questions at the same time often just leads to panic at the other end of the line. After your top priority has been met, you can move to the next one.
  • Never lose hope. Progress in this present time has never been faster, we are rapidly gaining new insights into what is happening in the brain, and new treatments may arrive on the horizon.
  • Finally, and most importantly, become an advocate for your disease! Parkinson’s disease is at least to an extent a man-made disease, caused by exposure to pesticides, solvents, and other toxic chemicals in our environment. We all need to take action to prevent people from becoming sick in the future, and at the same time, we need to secure much more funding for research and for development of better care models. We have laid down this crucial call to action in our new book, Ending Parkinson’s Disease, which I wrote with Professor Ray Dorsey, Professor Michael Okun, and Dr. Todd Sherer. I believe that this is essential reading for everyone living with Parkinson’s, and it contains a recipe for a hugely important PACT, namely to Prevent more people from developing Parkinson’s, to Advocate, to deliver better Care, and to improve Treatments.
  • The book can be ordered via EndingPD.org or sites such as Amazon. Importantly, all proceeds will be donated to charities and used to support our efforts to try and end Parkinson’s disease, and to help improve the quality of life for the millions of people living with Parkinson’s disease worldwide.

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Thank you, Dr. Bloem, for speaking with PD Wise.