Events


WORLD PARKINSONS CONGRESS – KYOTO, JAPAN 4 – 7 JUNE 2019

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

I should emphasise 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.

ACCOMMODATION AT THE CONGRESS

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.

TRAVEL

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.

TOKYO

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)

KYOTO

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


November 8, 2018 meeting notice

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Topic :

LSVT BIG and Physical Therapy​​

Speaker:

Sarah Gutenmann, PT, DPT, LSVT BIG
Dr. Gutenmann graduated from Clarkson University with a doctoral degree in physical therapy. Dr. Gutenmann also holds an associates degree in nursing from SUNY Canton, and a BS from SUNY Potsdam.

Dr. Gutenmann holds a specialization certification in LSVT BIG, which is a specialized training program designed to train rehabilitation therapists in an evidence-based treatment approach for individuals with Parkinson disease and other neurological disorders. Sarah is also very interested in women’s health and pelvic physical therapy.


October 11, 2018 meeting notice

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Topic : Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders.


September 13, 2018 meeting notice

Join us for our monthly meeting.
Date: September 13, 2018 – Thursday 7:00 at Beverwyk.
Topic: Deep Brain Stimulation (DBS) – Christopher Henessay representing Abbott Infinity DBS

THIS MONTH ONLY – WE WILL MEET in a different building at Beverwyck. We will meet in the Van Cortland Room, 40 Autumn Drive, (Directions)

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information


August 10, 2018 – Davis Phinney Victory Summit on-line event

THE VICTORY SUMMIT® EVENT LIVE BROADCAST

For the first time ever, the Davis Phinney Foundation will broadcast The Victory Summit®  event worldwide. The event, which will also be attended in person by several hundred people, will be filmed at the Pasadena Convention Center and streamed, free of charge, to anyone worldwide with access to a computer and internet. We’ve taken on this initiative as a way to allow more people living with Parkinson’s, care partners and care providers to take part in this valuable day of information on living well with Parkinson’s.

  • WHEN

    Friday August 10, 2018 1:00 pm to 7:30 pm


  • WHERE

    Worldwide (broadcast from Los Angeles, CA)

read more


PD SELF – a learning program designed to help people with Parkinson’s better manage their disease

Our program starting in September 2018 is full. We will be having another PD SELF program starting in September 2019. Please give us your contact information, by filling in the interest form below, to be put on the waiting list for September 2018 and to reserve a place in the program starting September 2019.

PD SELF – Parkinson’s Self-Efficacy Learning Forum – A national program, now being offered in Albany for the first time, that provides people with Parkinson’s with an in-depth understanding of the disease and the tools to manage it with confidence.  There is no cost to attend.  Registration is required.  Space is limited.

Thank you for your interest in the PD SELF Program. This self-efficacy learning forum is specifically designed for those who have been diagnosed with Parkinson’s disease (PD) within the past three years and their care partners. 

PD SELF is a learning program designed to help people diagnosed with Parkinson’s in the last three years manage their disease and their life with Parkinson’s.  We will learn about the disease and how to approach goals, tasks and challenges.

Sessions will be held starting September, 2019.  There will be a total of eight monthly sessions. Each subsequent session will be from 4:00 – 7:00 on the second Wednesday of the month.  We will meet at the Terrace Community Room at Beverwyck in Slingerlands. – 41 Beverwyck Lane, Slingerlands, NY 12159. (Map) (directions)

Debra Virtanen and Jud Eson traveled to Denver in May 2018 to attend a training course to learn how to facilitate the PD SELF program.  Facilitation teams, including a person with a clinical background and a person with PD, came from 11 locations across the country to learn.  Team Albany included Debra, a physical therapist, and Jud, a person with Parkinson’s.  This program is distinct and separate from the Capital District Parkinson’s Support Group.

Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

Participants are provided with a PD SELF Curriculum Field Guide containing the course content for each of the eight modules.

  1. Adapting to Parkinson’s Disease
  2. Acquiring Self-Efficacy
  3. Creating your personal health care network
  4. Understanding PD medications and treatments including complementary and alternative medicine
  5. Benefiting from exercise and neuroplasticity
  6. Understanding cognition and nonmotor symptoms
  7. Strengthening the relationship between people with Parkinson’s and Care Partner
  8. Going forward

Over the eight modules, participants learn how to master their own relationship to Parkinson’s. The skills and behaviors learned include:

  • Setting and achieving goals
  • Self-monitoring
  • Keeping health care records
  • Communicating with your doctor
  • Establishing new routines
  • Overcoming obstacles
  • Problem solving
  • Reflection and journaling
  • Managing negative emotions
  • Realistic optimism
  • Resilience and tenacity
  • Self-Advocacy

For more information and to register, please visit the PD SELF website at PDSELF.org or send an email to PDSELF.Albany@gmail.com .

If you are interested  in registering, fill out an interest form


Spread the word with these flyers

Printable PD SELF flyer

Printable Flyer #2 PD SELF Albany Flyer

Printable pd self cards

 


August 9, 2018 – meeting notice

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

TopicRachel Kurtz – Holistic Health Coach

Rachel Kurtz is focused on helping folks dealing with chronic illness, or pain. She has expressed a strong interest in movement disorders, especially people with Parkinson’s. She takes a multi-disciplined approach to dealing with her clients.

Rachel’s primary goal is to support and guide her clients, whether healthy or living with chronic pain or illness, to live a more healthy and fulfilling life. Working closely with her clients support system and health care practitioners, Rachel will develop customized programs to help achieve individual health and wellness needs. In addition, she uses
insights from the latest research in positive psychology and health.

From Here to Wellbeing
Rachel Kurtz, Holistic Health Coach
Located in Saratoga Springs
518-260-3973 * rkurtz09@gmail.com

See attached flyer

Rachel Kurtz_Health Coach_3-11-18