Japan and More June 2019 (short version)

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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.

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.

Parkinsons and WPC2019 – Summary

So, I’ve had Parkinson’s for 14+ years and I don’t know why or how  but for at least some part of the day I’m doing the best I’ve been doing in 6-7 years or more.  I am usually pain free for at least some of the day.

However we know that Parkinson’s is degenerative and anything can happen at any time.

Since I was doing so well, I decided to leave the walker and wheelchairs home and just take the hiking sticks and three leg stool chair. I left the reservation for wheelchair on file just in case.  I think I only used it on the Hawaiian Airlines flights at Honolulu going out and  the Osaka airport coming back.

Kyoto is about 13 hours ahead of us so my strategy with my meds was to continue taking the Sinemet every three hours and then take the other related pills at their regular local time.  On the second day I was shaking a bit and realized I was low an amantadine and Requip.  So basically I managed with the meds.  I had a problem though starting  a day or two before the end of the trip.  I started getting bad dyskensia’s which I haven’t had in two years ago.  Doc said to wait until I get back on the regular schedule and he was right it went away and when the pain isn’t there, I’m as good as I can be.

My fear in attending an event like this, besides the travel is what if my meds give out at the wrong time.   That happened a few trips ago in Detroit. After I said I don’t need the wheelchair from the airport, I crashed and had to force myself to walk  to the next gate.  Sometimes if the meds give out I get scared and angry if I can’t find Ron.  I’m aware of this and try to control it but sometimes I can’t. If the meds are giving out I can’t take notes or if I do I can’t read them later.  I just feel so helpless and hopeless when this happens but when the meds work, I’m generally good except for the fear of what might happen in the future.

All in all I made it and will probably do it again.  We’ve booked three round trips to Lake Worth for the Fall/Winter and a cruises for Dec 2019 and August 2020 and I’m going for training to be an Aware in Care Ambassador, an advocate for Parkinson’s to the medical community.