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World Parkinson Congress 2019
So, how did we wind up in Kyoto Japan this June 2019. Well I was diagnosed with Parkinson’s Disease in 2005. As with everyone when you are in your late 40’s as I was, it takes a while to accept. I think I did by 207 I did, but for Ron it was closer to 2009. In any case I was able to function reasonably well but we did slow down our work schedule and increase our traveling. Slowly walking became more difficult and after a strenuous walking trip in Krakow in 2015 I had severe back/spine problems. I had back surgery July 2016 which did not solve the pain. Working with a good neuro physical therapist and therapeutic masseuse, I feel much better now but still can’t walk long distances.
In any case when we heard about World Parkinson Congress 2013 in Montreal, it was an easy decision to attend, 6-7 hour drive and we had not been there in many years, we never were to Portland so again, an easier decision, although I spend a good deal of time in a wheelchair in September 2016 but we flew in and out of Seattle, visited friends and attended the conference. My husband enjoys hearing about the research and I enjoy the more practical sessions on what is on the market or how to “live better”
When Ron heard WPC2019 was in Japan , he got very excited because we never traveled to that part of the world. He booked a hotel 300 days in advance (as early as they take reservations) but I kept saying no, not with my back pain. I finally let him book the rest of the trip late in 2018. WE tried to make the time zone difference less painful by stopping in Los Angeles and Honolulu on the way out and Honolulu and Seattle on the way back. I think it probably helped and we got to visit old and new friends.
I did have a little crisis on the way back. I started getting excessive dyskinesias which I had not had in about two years but a day or so after I got home, they dissipated. So we headed out May 29 and returned June 11 while attending the June 3-6 conference.
Why we attend WPC2019
So why do we attend WPC. WPC attempts to bring together the entire Parkinson’s Community. This includes doctors, researchers, grad students, PWP, caregivers and all sorts of support people in pharmaceuticals, medical devices, living arrangements, physical and occupational therapy, exercise, etc. It was amazing too that most of the PWP and caregivers were highly educated people themselves.
The 2013 and 2016 had about 5000 attendees while 2019 had about 3500. At the first two, we saw little of the medical community because they seemed to be in private meetings much of the time but this conference had fewer pharmaceutical representatives and fewer doctors from the major Centers of Excellence facilities. But it’s the peer networking that is important to me anyway.
When registering for the conference they offered the opportunity to be paired with a “buddy” from another country. I thought it a little corny at first, but I filled out the form and about 2-3 weeks later I was introduced to Karyn Spilman from Australia. We matched in all but two categories – she’s had DBS and I have grandchildren. We’ve communicated since February and I’m sure we’ll keep in touch.
So the reasons we attend:
- To travel to places we not have otherwise traveled to
- To learn about the latest in research
- To learn about products that are new on the market
- To acknowledge people who have made a significant contribution to the Parkinson’s Community
- To get “hints” on how to “Live well with Parkinsons”
- To meet other people dealing with similar medical problems
Traveling to Japan
So, we left for Kyoto on May 29 from ELM and had the typical layover in DTW before flying to LAX. We arrived about 3:30PM local time.
We went straight from the airport to our college friend Ralph’s house in Manhattan Beach. We visited for about two hours and then WE DROVE THEM to the airport.
The next day we had lunch at the lovely home of Mark and Alyssa. We met them on the Baltic Cruise in Aug 2017. We have multiple small world connections including that her uncle was Ron’s Cantor and she’s from Schenectady where Ilene lives now and we have other friends who are from there. For dinner we continued to drive south, and met up with Seth and his wife Karen. Seth lived across the street from me briefly when we were preschool but then we met again in High School for marching band and a few classes. My brother and his brother are good friends.
Friday, we met some cousins on my Dad’s father’s side. Steve and his wife Sanna and his sister Susan met us for lunch. They remember meeting my grandpa Hyman and I remember meeting their grandma Gussie and mutual great aunt Esther. I remember my Dad mentioning their Dad Henry but I don’t exactly remember ever meeting him. I do hope we can meet again.
Finally in our stay in LA. We had Shabbos dinner with Debbie and Joey Green. I knew Joey in grades K-2 at Greynolds Park Elementary and then met him again in 7th grade and through high school and we’ve kept in touch (even before Facebook ) all these years.
Then, on our anniversary, we went to Honolulu. We had a nice swim in the ocean and then we met Kathy’s son Jackson (who is in the Navy) and his wife Kate for dinner. And brunch the next day with business colleague Miles and his wife Joanne. We then toured part of the island using an app we found for our last Hawaii visit, GyPSy, a GPS based mobile tour guide. We ultimately found a nice mini-golf a about 20 minutes from Waikiki.
Then on to Japan.l…
Arriving in Kyoto
We boarded our Hawaiian Airlines flight to Osaka but then we were delayed 3 hours with a repair in the cargo hold. It was a smooth flight but Ron had actually booked it wrong and while we boarded on the morning of June 3, with the travel and international date line we arrived the night of June 4 and therefore missed the Buddy event and opening ceremonies of the Conference. We realized this before the trip but could not change the hotel or flight. The hotel knew we were going to be a day late on our reservation.
So we arrived three hours late to Osaka. Luckily we didn’t check luggage. By the time we figured out the trains, we had to “run” for the last train of the night to Kyoto and were told to pay on board. The cars were packed and we were by the door the first 2/3 of the trip (I had my travel camp stool to sit on.). We arrived in Kyoto and the English taxis were gone for the night but the driver understood the name of our hotel.
We arrived at the hotel and it was very nice. They insisted on bringing our bags to the room and the representative even escorted us to the room and did the check-in in the room.
About the Conference
This was our third Conference so we knew what to expect. We learned however that in Japan, pharmaceuticals can’t talk to end users and certain items like cannabis can’t be discussed. So many topics that we wanted such as new drugs coming to market, current stage 3 trials, etc. were not available. Some studies were in the poster sessions.
The Conference Days were pretty much :
8-9 am Hot Topics Covering 4-5 topics in an hour in large theater
9-9:30 Awards session
9:30-11:30 Plenary with four topics in two hours
Lunch 11:30-1:30 but there are still lighter sessions and poster presentation tours (researchers and grad students). There were also special sessions in the vendor fair area and time to see the vendor fair itself.
The afternoon consists of workshops, choice of 3 topics 1:30 to 3 or 3:30-5 with about 12 smaller roundtable discussions on a first come basis. In the Conference book, the sessions are designated as Basic Science, Clinical Science or Comprehensive Care and as “crosstalk”, moderately scientific or highly scientific sessions. Events after 5 were primarily for professionals. Wellness sessions such as Yogi, Tai Chee, Boxing, singing, etc. were available all through the day from 7:30-5:30
Most sessions were in English with headsets available for Japanese translation. Some sessions were Japanese only, some sessions had English slides on one side of the room and Japanese slides on the other. The Wellness sessions had a translator working with the speaker.
So there is no way that one person can cover every topic. We generally went to separate places. The WIFI was usually available which made it easy to meet back up. This convention center was very spread out so between that and taking the subway, we walked over five miles a day.
So because of the limitations, the main topics were:
- Non-motor symptoms
- Stem cell research
- Living Well
- Support Groups and other Reference Material
- Pain Management
- Young Onset
Conference Day 1
WE decided to take a taxi to the conference the first day. It was about 20 minutes from the hotel.
I tend not to go to the large theater events. I find them overwhelming and I can’t tolerate the big crowds. So I started my day in the Renewal room with Yoga and then LOUD (a voice class). I also met my buddy Karyn and some other people, just chatting in the lounge area. There were a lot of people from Australia and New Zealand
Ron went to the main theater. In the Hot Topics session there was a speaker from Michael J Fox about needing more people to volunteer for clinical trials
I spent the lunch hour at the vendor fair and In the afternoon, I attended a session on Cognitive problems and Ron attended one on sleep. In the second afternoon session I attended one on diet but I left early to go to the vendor fair where I got involved with a session on sense of smell and Parkinsons. Ron went to the session on sexual function. No significant take-aways from any of these.
We took the subway back to the hotel along with my buddy Karyn and her husband John. We had a Japanese dinner at the hotel.
Conference Day 2
Thursday we took a walk in the morning and saw one of the local shrines and then took the subway to the conference. I attended the end of the Tai Chi and then stayed for the Mighty Maestro class in the Wellness area while Ron attended the main sessions.. Today’s main sessions were focused on genetics.
At lunch time we attended a session on Living Well with Parkinson’s: What’s Your Secret. I was very disappointed with this one because none of the speakers were on topic. They discussed what should work in theory and what didn’t work.
In the afternoon, I attended a great session on Pain. The big take away was that Pain is a Parkinson’s symptom and should be addressed by the Movement Disorder Specialist. Ron attended a round table.
The second afternoon session I attended a session on Non-motor symptoms that are often overlooked: sexual disfunction, urinary dysfunction and orthostatic hypotension. The first speaker was good and seemed to be a repeat of what Ron attended. The second speaker was a native Japanese speaker and she just read the English slides without an explanation. She would have been better to let someone else present and then just answer questions. Ron went to a session on dietary supplements. His take away was to watch not to take too much B6, make sure meds are taken at optimum times and try drinking lots of water to ease constipation .
We took the subway back to the hotel, walking by the Imperial Palace on the way back. We ate dinner at an Irish Pub.
Conference Day 3
The last day we took the subway to the conference. I went to a PD Movement session but then to the main session. Today’s topics were about Living with Parkinson’s and managing related problems. I also spent more time in the vendor fair talking with the folks from Parkinson Foundation in Miami.
In the afternoon, I went to an interesting session on New Therapies and Emerging Therapies and Ron attended Is There a Best Exercise for Parkinson’s. Of course the bottom line there was any and all exercise is needed. In the session I attended they discussed why the non-invasive MRI technique for targeting a spot similar to DBS is not working well and also several studies on repurposing other drugs have not been successful. In the second afternoon session, Ron attended a session on stem cells and I attended one on diet with no significant new information.
We took a taxi back to the hotel and then went to a Chabad house for dinner.
Travel home from Kyoto
Saturday morning we took a taxi to Kyoto Station. We purchased our ticket for a 3pm train to Osaka airport and then took the Sky Bus Hop On/Off. We got off at a local market and then we wanted to get off at one of the big Temples but it was raining but we got off a few stops later and saw a smaller Temple. When we returned to the Station we took a taxi back to the hotel and then did checkout and a taxi back to Kyoto Station. We arrived at Osaka Airport about four hours before our flight so we went to the shopping area and had a snack and relaxed until time to check in. I decided to use a wheelchair to get to the gate and Ron needed to push it so we checked both bags. The flight was fine and while we left Japan 8:45 at night, Saturday night, we arrived in Hawaii before noon on Saturday.
So, since our hotel room wasn’t ready, use continued around Ohau using GyPSy. We stopped at the Dole Pineapple Plantation and Waimai Falls before heading to Waikiki to our hotel.
Sunday morning, we made one final stop recommended by GyPSy before heading to the airport. It was the cemetery for battles in the Pacific but equally as important it was up on a hill known as Punchbowl Crater and had beautiful views of the city.
We arrived in Seattle late Sunday night. WE went to a Belgian waffle restaurant for breakfast and then we went to Pike’s market. We wound up buying a King Salmon, Halibut each whole and a piece of sea bass. The clerk prepared them Tuesday and we had them in Corning on Wednesday. We didn’t buy any glass this trip at all. Ron got a shirt and I got two dresses and a sapphire necklace in Hawaii and we got the fish in Seattle.
We had lunch at an Indian restaurant with Don and Carol Rubin and Robin and Dave Kaatz. Don and Carol were from Corning. Robin and I worked together at Corning but then she moved to Seattle to work for Boeing. We then walked briefly through a Japanese Garden near the restaurant. We had dinner with my high school friend Ellen Weiss and her husband Tom Dodson.
And Wednesday we flew back to Elmira/Corning. Other than a delay waiting for crew on the final flight, all was well.
Was the trip worth it. Probably. We saw places we had not seen before. WE met interesting people and enjoyed spending time together. We were a little disappointed in the conferences because of the difficulty to get there and the limitations on presentations. We feel that some of the speakers could have been better. I certainly prefer to hear positive motivation than negative. But the bottom line is that it’s nice to have an all encompassing conference even if once we are there each group largely stays by themselves.