Bastiaan Bloem: power against Parkinson's disease
2022; Elsevier BV; Volume: 22; Issue: 1 Linguagem: Inglês
10.1016/s1474-4422(22)00393-3
ISSN1474-4465
Autores Tópico(s)Parkinson's Disease Mechanisms and Treatments
ResumoClark Kent is Superman. Matt Murdock is Daredevil. Bruce Banner is Hulk. Peter Parker is Spiderman. Bastiaan Bloem is Healthcare Hero (as named by the Dutch Ministry of Health). Or maybe Dr Tulip? This handle—if not quite as punchy as Wolverine—was given to him by former colleagues in California, and it does kind of work. It's an obvious reference to Bastiaan's home country (the Netherlands), and the tulip is a symbol that represents the fight against his arch enemy—Parkinson's disease. But, in case you should accuse me of being onomastically frivolous, may I point out that when he gigs as a DJ, he goes by the name of DJ Boem Boem Bloem! Of course, he does have a real title—professor of movement disorder neurology at the Radboud University Medical Centre (Nijmegen, Netherlands)—but in all his e-mails to me, he just signed off as Bas. Despite having been a semi-professional volleyball player in the Dutch Premier League, and having played for the under-18 Netherlands national team, Bas insists he cannot leap tall buildings in a single bound. But he does possess other handy powers, like being able to think outside the box, and getting people to listen and effect change for the better, powers that have placed him in the top 1% of most cited scientists and that have been recognised by the committee of the Netherland's Stevin Prize. This prize is bestowed on “researchers with international reputations who have achieved an exceptional success in the area of knowledge exchange and impact for society,” and Bas was garlanded for constantly keeping Parkinson's disease on the agenda and for developing and disseminating new ways of improving patients' quality of life. Bas makes regular appearances on ParkinsonTV, a web-based informative programme for people living with Parkinson's disease, which has more than 75 episodes and up to 10 000 viewers. Another of his initiatives is the website ParkinsonNet. “I developed this with my good friend and close colleague Marten Munneke”, he tells me. “Through in-depth training, collaboration, and feedback between players like physicians, physiotherapists, speech therapists, and patients themselves, we can provide a model of network care to treat large numbers of patients. In the Netherlands, ParkinsonNet reached nationwide implementation in 2010, and has since been exported to the USA, Australia, Luxembourg, and Norway.” Not only has this online initiative improved patients' care and quality of life, it has reduced Parkinson's-associated health-care costs. But Bas is possibly best known among neurologists for his many studies published in leading journals in which he has investigated gait and balance dysfunction, trying to understand the underlying pathophysiology that might lead to new therapies. “A specific focus here is on the evaluation of compensation strategies typically self-invented by patients to overcome their walking deficits”, he tells me. “I have always been fascinated by the creativity and resilience of patients!” I notice that Bas keeps mentioning patients—listening to them, learning from them, involving them. “I have worked to reappraise the role of patients in care and science”, he tells me, “trying to change their contribution from passive to active, to have them join clinicians and research teams as serious partners”. Bas did a TEDx talk on this subject. “I showed how doctors should share their power with patients to create a new partnership that serves as the founding principle of modern health care. I initially ascend as a god in a forklift, accompanied by the singing of angels, but subsequently come down to take off my white coat and sit with a patient to discuss his personal issues.” He explains to me that it's about getting rid of hierarchies, about participatory care and shared decision-making; it's about making people with Parkinson's disease feel more empowered, informed, better cared for as people rather than patients. Does Bas have a larger-than-life personality? You could say that! And he certainly has the gene for optimism (he tells me that a psychiatrist colleague wants to sequence his genome for it). But, just like the comic book superheroes, a mild-mannered Bas lives under the Parkinson's disease fighter's cape. “I really have a passion for model trains”, he reveals. “As a young child, I built an entire model railway system, complete with scenery. I had to stop this hobby at the age of 18 when I entered medical school. But 2 years ago, I decided to pick it up again, and now our entire cellar is filled with a truly immense model railway system!” Bas also likes to indulge in sad music. “When I'm entirely alone, I somehow try to balance my eternal optimism by listening to incredibly sad music. I submerge myself into a state of complete melancholy by listening to the darkest music possible!” Bas has also never really given up sport, although these days he is a big spectator of both volleyball and basketball, his sons' chosen sports. “When I'm invited for international lectures, I always tell the conference organisers that I'm happy to come, provided that they organise the journey such that I can be on time in the stadium on Saturday afternoon to see [my sons] play.” Now that's a superhero! In the Batman film, Dark Knight, the eventual Commissioner Gordon looks up at the Bat-Signal projected like a sign of hope onto the clouds above Gotham City, and says, “I like reminding everybody that he's out there”. While Parkinson's disease remains a supervillain, it's good to know the Basman is out there too. For more on the Stevin Prize see https://www.nwo.nl/en/nwo-stevin-prizeFor more on ParkinsonTV see https://www.ParkinsonTV.nlFor ParkinsonNet see https://www.parkinsonnet.nl/For more on the impact of ParkinsonNet see Articles Lancet Neurol 2010; 9: 46–54For more on compensation strategies see N Engl J Med 2010; 362: e46For the TEDx talk see https://www.youtube.com/watch?v=LnDWt10Maf8 For more on the Stevin Prize see https://www.nwo.nl/en/nwo-stevin-prize For more on ParkinsonTV see https://www.ParkinsonTV.nl For ParkinsonNet see https://www.parkinsonnet.nl/ For more on the impact of ParkinsonNet see Articles Lancet Neurol 2010; 9: 46–54 For more on compensation strategies see N Engl J Med 2010; 362: e46 For the TEDx talk see https://www.youtube.com/watch?v=LnDWt10Maf8
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