My visit to Japan began with the welcoming site of Mt. Fuji
rising above the clouds. Once on the
ground it was the welcoming nature of the Japanese people that allowed me to
navigate a number of hurdles and arrive on time at the National Stadium, where
the welcoming faces of members of the Japanese Parkinson Disease Association
(JPDA) jpda-net.org including Hisashi Takamoto, were waiting.
Making it one step closer to my goal of having been to the
sites of all the Olympic Games was especially rewarding here, as some of the
individuals from JPDA had actually attended the Tokyo Olympics in 1964.
The
National Stadium served as the starting line for my 4 mile run in Japan and our
cheering squad included, Tomiko Maiya, a former marathon runner. For the first one-half mile I was joined by a
very courageous 66 year-old gentleman with Parkinson’s and my guide for entire
route was Syoh Koshita, who works with JPDA.
We reached the 4 mile marker, very appropriately, within
view of the Tokyo Dome. We then continued
up a short hill to Juntendo University
My meeting with JPDA members and Juntendo University
movement disorder specialists, Prof
Nobutaka Hattori and Dr. Genko Oyama, allowed for an interchange of ideas on a
number of topics related to Parkinson’s, but there is one issue that was particularly
memorable for me. In the formal
presentation that I have prepared for many of the stops on this journey, I
suggest 3 reasons for pursuing greater Parkinson’s Disease Awareness in our own
societies:
1.
To avoid those with Parkinson’s feeling a need
to hide the diagnosis.
2.
To avoid others pitying those with Parkinson’s
3.
To gain acceptance of Parkinson’s throughout the
general public
To highlight the issue of People with Parkinson’s (PwP)
feeling a need to hide the diagnosis, I present the story of Ben Petrick, an
American baseball, who played 3 years in the Major Leagues after his diagnosis
without his teammate or fans knowing. In
a book I am currently reading, Dr. Andrew Lee’s autobiography of the famous
Liverpool and Arsenal soccer play Ray Kennedy, the author states that shortly
after his diagnosis “Ray drew a parallel between himself and the Elephant Man.” In the meeting with JPDA members, one older
gentleman passionately described his dilemma, trying to decide whether to
attend a reunion this year because of the shame he associated his disability
due to Parkinson’s. At one of stops in
the coming days, some of those with Parkinson’s have asked to meet with me
privately after my talk because they are not comfortable being seen at the
conference.
As I stated in a
recent interview with the New Straits Times of Malaysia, when asked about my
hopes for future Parkinson’s treatments and the impact of my project…better
treatments, and possibly a cure, will come in time with that timeline largely
determined by scientific advancement. In the meantime, the quality of life of
those with Parkinson’s can be greatly improved by increased Parkinson’s
awareness and better acceptance by the general public. The timeline for these advances is much more
dependent upon participation by the masses of those affected by Parkinson’s,
rather than the relatively small group with scientific expertise. This goal of
increasing Parkinson’s Awareness is one that I share with my new friends from
the Japan Parkinson Disease Association and Juntendo University.
Country Sponsors
I would like to personally thank the Munn Family for
their generous donation to Team Fox to help expand the impact of Run-the-World
4 Parkinson’s Disease. I would also like to
thank Eric and Nicole for their wonderful friendship over the past 21 years.
I would also like to recognize the
Japan Parkinson Disease Association for their very generous donation to 444
Parkinson’s Foundation, which will be donating proceeds this year to help fund
travel to the World Parkinson Congress in 2016
Congrats Mark, very inspiring!
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