June 4, 2019 Kyoto Japan – World Parkinson’s Congress

The World Parkinson’s Congress is held every three years. The last one was in 2016 in Portland Oregon The next one in Japan.


There has been strong interest in our support group in attending the next World Parkinson’s Congress in Kyoto, Japan.

Letter from Ian Wing

I should emphasize that I am happy to play a coordinating and advisory role but cannot be a travel agent or “guide” in the traditional sense. Attendees will need to make their own travel and accommodation arrangements. I will be happy to make suggestions and, depending on the level of interest, organize some sight seeing in Tokyo prior to the Congress.

THE CONGRESS  – www.wpc2019.org

This is held every three years and brings together doctors, researchers, clinicians, people living with PD, caregivers and others. Participants are from all over the world and there is a great deal of interaction between participants. There were more than 4000 participants in Portland.

Sharon and I have attended the past two congresses in Montreal and Portland, OR and a stand out feature was the vigorous debate between medical professionals and also between people living with PD, their caregivers and clinicians. In the summing up session in Portland, several medical professionals said that the Congress was unique in that they received much valuable feedback – and push back – from people living with PD. As it is a world congress, participants are able to share knowledge and experience from many countries.

The web site is up and contains a lot of general information.

According to the organisers, attendance is going to be limited and registration will open on September 10. The cost is $300 for people with PD and also for caregivers. The cost increases to $350 after Feb 28 2019.


The organisers make arrangements with specific hotels near the venue and represent the full range from high end to moderate. In both Montreal and Portland the moderately priced accommodation booked out very quickly. The website is suggesting $150/night as the average for Kyoto.

There are other options such as Airbnb and “business hotels”  – but you need to keep in mind that Japan is a very densely populated country and space is always at a premium. The cheaper end will have very small rooms and bathrooms. Also, Kyoto is a hilly city and roads are very narrow with narrow sidewalks if at all.

For that reason and because trains and buses are often crowded and not designed for large pieces of luggage I cannot emphasise strongly enough that you need to minimize the amount of baggage you bring with you.


Expedia is showing economy fares from JFK and Boston to Tokyo (Narita (90km from central Tokyo) – or Haneda (20km)  ranging from about $850 on Chinese airlines via Beijing or Shanghai to nearly $2000 on US or Japan Airlines.

The nearest international airport to Kyoto is Osaka – Kansai International (KIX). Flights are more expensive than to Tokyo – particularly n US airlines.

Japan Airlines is offering a fare of $2600 JFK – Tokyo in their premium economy cabin – which I have found to be very good. Some people have also expressed interest in travelling to Australia after the congress and the fare JFK – Tokyo – Sydney return is $2700 in premium economy.

I have found the expedia “bundled” deals of travel and accommodation to be very good value in Japan – but again, you get what you pay for – rooms at the APA chain of hotels contain a double bed and approximately one foot of space around it – about 9 sq ft at the entrance and a bathroom about 12 sq feet. The very confined space can be challenge to those of us who have balance or movement issues.


While Kyoto is a fascinating city and, as the capital of Japan from 794 AD until 1868, contains a great deal of history, first time visitors should definitely spend a few days in Tokyo, one of the world’s great cities. Sharon and I lived there for 8 years and are familiar with its layout and points of interest. It has an extensive and extremely efficient subway system but does involve a lot of walking and stairs – and must be avoided in rush hour (the Japanese have an expression – “sushizume” – which means jammed into the train like grains of sushi rice in a mold. )

Taxis are plentiful but are expensive and very few drivers speak English.

I am looking into hiring a mini bus and driver which we could use to do our own tour. Cost is about Yen90000 – $800 – or $50 per person for a 16 seater.

If participants would like to spend say 3 days in Tokyo – I suggest we plan on arriving in Tokyo on May 31 – leaving the USA on 29/30 May.

The conference begins on Tues June 4 in the afternoon and we could depart for Kyoto on the Shinkansen (Bullet train –  200 mph) on Tues morning – travel time is 2 hours 15 mins. Cost is about $200 one way for a reserved seat (recommended)


Organisers at past congresses have arranged group tours to places of interest and I expect the Japanese organisers will also do this. Apart from the Imperial Palace, there are a number of famous temples and shrines in Kyoto – Kinkakuji (Golden pavilion) and Ryoan-ji (famous rock garden) – and many others. Kyoto was not damaged in WW2 and so the older parts of Kyoto date back many centuries. This includes the Gion district, home to geisha traditions. The city of Nara is nearby and was the capital prior to Kyoto.

Osaka was totally destroyed during WW2 and so does not feature much on the tourist trail.

Please monitor the web site and let me know if you have questions or need advice on making arrangements.

Commencing in November I propose that people intending to go to Kyoto meet for ½ hour prior to the regular meeting so we can continue the planning.

I’m looking forward to having a capital district group in Kyoto!

Ian Wing