Parkyvist in the picture: Ruud Overes
This is part II of a series of blogs in which I put a Parkyvist in the spotlight. In my definition, a Parkyvist is someone who has a diagnosis of Parkinson’s disease and who noticeably uses his/her talents to end Parkinson’s.
26th of March 2020
Before Parkinson, Ruud was program manager at Philips Healthcare where he was responsible worldwide for the IT development and building of the new logistics systems. “I kept the transport stock, did forecasting. I had to manage 45 people. At one point I couldn’t get the organisation done anymore. I sat crying in my chair and I didn’t know what was going on,” says Ruud. One evening he went out for dinner with a nurse friend: “I said I had a frozen shoulder. I couldn’t write well anymore, limped with my right leg, couldn’t type. I thought it was the stress at work. I thought, “Now I have gone a step too high with my career urge.”” The nurse recognized the symptoms and recommended to visit a neurologist. The neurologist asked Ruud to snap his fingers a few times, but he couldn’t. He froze. And the neurologist said, “You just might have Parkinson’s disease.”
In the meantime Ruud had already resigned from Philips and he planned to take on a less complex job: “The day my letter of resignation came, I was diagnosed. That is bad luck and financially not very handy. I now earn 1/3 from what I earned before”. With the diagnosis in his pocket, his life changed completely: “It was suddenly completely clear what was going on. I had to recover first, but I also thought: I will not sit idly. The things I wanted to do after my retirement, I must and can do them now, 11 years earlier than planned“.
Ending Parkinson’s with sports
“I wanted to go on a bicycle tour through Europe after my retirement. So I started earlier,” says Ruud. “A friend said: “while you are at it, why don’t you look for a sponsor””. And so that’s what happened and Ruud went on a 10,000 km bike ride through Europe: “At the end I evaluated the whole as befits a good program manager. It tasted like more. A lot more. I wanted to turn Parkinson2Beat into a sports platform that organizes as many activities as possible, brings in money for fundamental research and makes people aware of the benefits of a good lifestyle. Then I turned Parkinson2Beat into an ANBI foundation (a charity). With a board, objectives, etc. ”
In 2019 he and a number of others cycled a few thousand kilometers through Europe again. Before and after all his bike rides, he had himself measured by Professor Dr. Bastiaan Bloem and Dr. Tim van Balkom: “I was – according to my UPDRS scores – better off after the bike ride than before. Also, before the first bike trip I was only able to remember a number with 3 figures. After the trip this was 6. This evidence supports the scientific literature which states that sports benefits PwP”.
In 2018/2019, Ruud raised 27,000 euros with his sports activities. However, he could not donate the money because there is little fundamental scientific research into Parkinson’s being done in the Netherlands. “My aim is to get Parkinson’s out of the world. But in the Netherlands, most research focused on interventions to deal with the disease, not to prevent, stop or cure it,” says Ruud. He then went to the director of the Dutch Parkinson Association – Carla Aalderink – and partly because of his interference, fundamental research has been added to the research agenda as a new research priority. The money that Parkinson2Beat raises has found its destination.
Raising money to prevent, stop or cure Parkinson’s is not necessarily something Ruud does for himself: “As long as we keep taking sensible steps together to end Parkinson’s, I’m happy.” In the meantime, he is also working on promoting lifestyle as medicine: “That’s what every person with Parkinson’s can do for him- or herself! I am convinced that the lifestyle component is very important in Parkinson’s. You don’t find a cure through lifestyle, but you can build up more reserves with more exercise, enough rest, dietary interventions, less stress. There are more and more studies that demonstrate this”. The bundle of Scientific evidence for lifestyle medicine, which was published at the end of 2019 by The Netherlands Innovation Center for Lifestyle Medicine – an initiative of TNO and the Leiden University Medical Center (LUMC) – is an important turning point for Ruud to now definitively include lifestyle in the recipe booklet of researchers and care providers.
Until this becomes reality, Ruud will keep on pushing and pulling and Parkinson2Beat will continue to build on a nice sports offer for people with Parkinson’s. Because of corona, all activities have been temporarily suspended until June 1, but behind the scenes the preparations continue as usual. Ruud hopes that the Cycling Europe 2020 round can continue. And – if corona permits – a real Parkinsoniada (Olympic Games for people with Parkinson’s) is planned for this summer in the Czech Republic. Parkinson2Beat intends to join with a group of 8 people. Eight sports are practiced: bocce, curling, table tennis, darts, chess, basketball (penalty throws), soccer (penalties) and blowgun shooting. If all goes well, Parkinsons2beat will organize the event in the Netherlands in 2021. Ruud hopes to be able to supplement the sports selection with his own favorites golf and cycling. And he is already working on raising the necessary funds: “I talked to NOC*NSF and gave a presentation for the UNSDG Meeting in Eindhoven. Also the Eindhoven University of Technology, the Park Theater and the councilor of my municipality and many more are thinking along about how to make this event happen”.
The connections Ruud makes everywhere are impressive. At the same time, he notices that Parkinson’s makes it difficult for him to follow up on all leads. Before he had Parkinson’s, it was his job to get to the core of the matter quickly. That’s no longer something he can do on autopilot. He may start with many things at once and does not always finish them all. That leads to restlessness in his head: “I keep grinding”.
To get peace of mind, he first takes the tasks out of his head: “I visualize my stock of tasks in large spreadsheets. Excel is my greatest friend in these times”. Then he hardly sets priorities. What he does do is set a timer that he sets off after fifteen minutes: “I then work on a subject for 15 minutes. After that quarter of an hour I am allowed to work on another subject. It gives me peace of mind.”
Ruud realizes better than anyone that the continuity of well-intentioned initiatives of PwPs is jeopardized as their disease progresses. He thinks that there should be more cooperation: “There is a parkinson community, but I think it is very fragmented. It would be nice, for example, if there were to be a kind of ecosystem of sports platforms in which continuity does not depend on the efforts of individuals. In such an ecoysystem, initiatives such as Team Gijs, Boxing against Parkinson, Positive Fit, Helden on Tour, Parkinson2Beat, etc. could all be approached from one point.”
While interviewing, I conclude that Ruud more than deserves the Parkyvist honorary title, and that it is the greatest challenge for every parkyvist to ensure that he or she passes the torch on time. So that the fire keeps burning and the common goals are achieved.
And that can rightly be called an Olympic challenge.
PS: In part I of the series starring a Parkyvist Benjamin Stecher took the stage (only at the time I did not know that I wanted to call them ‘Parkyvists’ and that there would be a series ;-)).