Team Parkinson goes to Amsterdam - 11/12/2012

Edna, John, and Ian Thomson The Walk begins...

I can’t remember why or when we actually decided to attend the First European Parkinson’s Unity Walk.  Maybe it was because our boss, Carol Walton, CEO of The Parkinson Alliance, was planning to be there. She was involved in the planning of the event and was asked to speak on behalf of the NYC Unity Walk, the model for Parkinson’s walks around the globe. Although Edna and I would not have any specific role to play in the European event, we decided to attend anyway. After all, we can’t make a difference if we don’t show up. And besides, there were a couple of Europeans who had represented Team Parkinson in races around Europe and around the world, and we hoped to see them.  So once we made the decision to attend the Unity Walk and the conference the following day, it was only logical that we should extend the trip for a little vacationing.  Edna did some research and came up with a two-week Italian tour that fit with our schedule in Amsterdam.  With the help of Becky, our local AAA travel agent, we planned our trip to Europe.

The flight to Amsterdam was easy enough, partially attributable to Becky’s insistence we take the extra leg room offered by “economy comfort” seating in the Boeing 747.  We were in two isolated seats by a window over the wing.  I think it was worth the extra cost.  Although the aircraft was full, I didn’t feel squashed or jammed in.  That can be important to a Parkie like me, because when I am uncomfortable, I get anxious, which increases my dyskinesia.  When I’m dyskinetic, I usually end up kicking the seat in front of me—not because I want to—but because I can’t help myself.  I’ll mention dyskinesia again before this story is over because it was (for me) one of the highlights of the conference that followed the Walk. We arrived in Amsterdam in the mid-morning, after a brief rain shower.  The skies were a little grey, but the temperature was very pleasant.  We went looking for a taxi-stand, and were soon greeted by someone who insisted he was a taxi driver and grabbed our bags and set off for his car.  He was pleasant and drove well and commented on some useful aspects of the city as we rode in from the airport. The bill when we arrived at our hotel just off Amsterdam’s central square was 80 Euros.  We found out later that that was just about double what we should have paid for a legitimate cab ride.  Lesson learned!  We didn’t make that mistake again, at least not on this trip.

We spent our first few hours sightseeing, taking pictures, and linking up with Carol for a brief tour of the city’s best shopping areas.  When we finally went to register for the events at the Conference hotel--with the most unlikely name of The Grand Hotel Krasnapolsky--there was a very low-key atmosphere. There were members of the governing board of the European Parkinson’s Disease Association grouped casually in the area, but there seemed to be no one particular in charge.  There was no one manning a registration table or taking fees for the conference.  Carol, at least, was in her usual mode, organized and talking to the right people to get things done.  I spent my time trying to get to know some of the more obvious PD patients. There was at least one gentleman from England, about my own age, who knew some of the people I had met at the Parkinson’s World Congress in Scotland a year earlier.  In particular, he knew Tom Issacs, one of the principal speakers at the World Congress and famous for fundraising while walking the entire coastline of the United Kingdom and finishing up with a run in the London Marathon.  The gentleman (whose name I have forgotten) said that he had also run the London Marathon and beaten Issacs in the process. Unfortunately, like many PD patients--including me--he did not look capable of running a marathon today. He required some assistance just to get out of his chair. Parkinson’s is so like that!

The following day, Friday, was the Unity Walk.  I have to admit that after several visits to the Unity Walk in New York City, with 10,000+ walkers and more than $1 million raised in a single day, the prospect of 500-600 walkers with no fundraising didn’t get me too excited.  But I was wrong.  There was great energy in the crowd as we gathered for the walk, and a festive feeling as we listened to speakers in Dutch and then heard them again in English.  In Carol’s case it was the opposite, she spoke first in English and was then translated into Dutch.  It was very nice of her to introduce me to the audience representing Team Parkinson and give an account of my marathon accomplishments, and it was funny to hear my name pop up again in the Dutch translation.

Fortunately, Edna and I were not alone in representing Team Parkinson. Team member and marathon finisher Teus van der Kolk and a friend with PD had come in from another part of Holland, and Englishman Ian Thomson, who ran the LA marathon with us, happened to be in Amsterdam on business, and wore his Team Parkinson T-shirt to the walk. The master of ceremonies for the walk was an attractive and fit-looking Dutch TV personality, Olga Commandeur.  She was tall, blond and energetic.  In fact, the Dutch seem to be tall and fit-looking people in general.  I have seldom felt so short and out of shape as I did in Amsterdam. There, everyone walks or rides a bicycle almost every day so the tourists were easily identified.

After the speeches from organizational leaders and politicos, the First-ever European Parkinson’s Unity Walk began with a flourish--and I mean that literally—with trumpets and drums, in an almost New Orleans mood. Two tall young women unrolled a banner proclaiming the event (I assume, since the banner was in Dutch) and Carol, Edna, Teus, Ian and I joined the front line of marchers. The drum corps set the pace, which was necessarily slow because of the marchers with PD. We trooped off together surrounded by the white T-shirt de jour and blue balloons tied to everyone’s wrists.  More than 1000 walkers spread out along a major roadway alongside one of the canals and proceeded for nearly a mile before reaching its goal at the plaza next to a major art museum.  There were tables and chairs and a stage set-up with loud-speakers, where the organizers took turns congratulating each other for a very successful event.  Since much was in Dutch, I just went with the flow.  Then they called on a singer, Eric Roos, obviously well-known in Holland, and he sang quite beautifully. He had a Frank Sinatra kind of ease about him and his voice held up well in the outdoor setting. Then a salsa-dancing coach was called on to get the Parkies off their seats and on their feet. I sat out the conga line, but managed to embarrass myself in the salsa drills.  I tried, but I must confess, I’m not much of a dancer.

As far as I could tell, the Unity Walk exceeded everyone’s expectations, in terms of the amount of local press coverage, the number of participants, and the joy of seeing a community called to action.

The following day was the 20th Annual EPDA Conference. Carol was called away on business back in the US, and Edna chose not to attend and set out to see the Anne Frank House.  I was very curious to see how similar (or different) this event might be to the many PD conferences I have attended elsewhere. The morning speakers were truly top-quality representatives of the European community, and they were celebrating the 20th such conference—a genuine milestone!  Much has changed in those 20 years, particularly in the treatment of PD, from the definition of the disease to the quality of care. Like the US, the Europeans are now focused on quality of life and patient-centered care.  Mary Baker, MBE, a high-powered force of nature from England and President of the European Brain Council, gave an impassioned presentation on the politics of Parkinson’s, and the challenges facing our community.  She was very impressive and it was clear she held little sympathy for politicians who waffled on health care issues while the European economy stumbled to its knees.

Another important speech was delivered by an Italian neurologist, Dr. Fabrizzio Stocchi, on Quality Standards of Care in Europe.  His point of view was not entirely encouraging, since there is a wide range of treatment capability among the many member nations in the EPDA.  He did make one very profound sidebar statement that caught my attention.  He said that dyskinesia is not controlled by length of time using L-dopa, but is proportional to dosage and body mass.  I see that as striking confirmation that my suspicion that dyskinesia is a function of the body chemistry, not the brain. Too high plasma levels of l-dopa sets off misfires at the muscular end of the circuitry.  This is more noticeable under stress, when excess dopamine is being produced in the adrenal glands.

Other concerns in the morning presentations included the importance of interdisciplinary teams, the difficulties of funding research, and the importance of patient involvement.  Nothing much different from issues back home.  
The afternoon sessions were just as important as I sat in on an engaging interactive session led by Dr. Bastiaan Bloem on patient-centered care, and a novel session called What is Life Worth?  It was a serious look at setting a price limit on the cost of treatment and its impact on the quality of care.  The video produced on the subject by the EPDA is really very good. I have a copy and am trying to figure out how to put it to effective use.
In summary, let me say that I was impressed by the quality of the conference, and the frankness of both doctors and politicians trying to find answers to difficult questions. On a personal level, I met some wonderful people, and hope to have inspired someone to take on a new challenge.

After the conference, Edna and I set off for a grand adventure in Italy, but that’s another story.

John Ball

Mary Baker and Carol Walton
Teus van der Kolk