An Introduction
In 2008, at age 44, I noticed a tremor in my right hand. I went to a neurologist who said to come back in a few months. Sure enough when I went back, he felt convinced I did indeed have Parkinson’s and recommended that I see a movement disorder specialist. That Fall, the diagnosis was confirmed. I was shocked and felt alone. I had two young children and had been married for just 6 years. I was not prepared for this. I felt isolated as most of my peer group had no significant health issues. I searched for support groups and exercise classes, but was turned off by the age group, which was significantly older than I was. I didn’t want to identify with the elderly set, so I opted out of these groups.
When I first heard about the World Parkinson’s Congress (WPC), I was 7 years into my Parkinson’s diagnosis. As I began to read more about the Parkinson’s community, I learned that the WPC was holding its next conference in September 2016 in Portland, OR. I signed up. It was the first time I experienced being in a community of people with Parkinson’s. What’s so special about the WPC is that it brings together people with Parkinson’s, scientists, neurologists, physical and occupational therapists and others serving the Parkinson’s community. It is an international forum for the most recent Parkinson’s-related discoveries. I booked my flight and hotel. My closest friend met me there. I took advantage of being in the beautiful Pacific Northwest by arranging to go on a bike tour near the Columbia River Gorge the day before the conference started. It was spectacular! It was then that I decided my goal would be to travel to the WPC conferences and combine these trips with outdoors activities like biking and hiking. I dreamed of the day when I could share that experience with other people with Parkinson’s (PwPs).
On the first day of the Portland conference, I entered the convention
Center by myself and went to lectures given by scientists, neurologists and physical therapists. To see and hear the vast amount of research happening for Parkinson’s Disease gave me hope. I also attended talks given by PwPs who told their stories of living well and facing their challenges head on with courage and grace. My friend joined me at a workshop led by a doctor who has had PD for 20 years. We were in tears as we told our story of a 55 year friendship. She has my back and was there for me during these few days and everyday since my diagnosis.
Fast forward three years and I booked my trip to the WPC Kyoto in 2019. I was going to miss my daughter’s graduation from middle school and she was upset. I knew I had to go. I arranged to travel with Backroads for a one-week hiking adventure, which began the last day of the conference. This time I signed up for the WPC buddy program for which I filled out a survey form that is used to match you with a buddy attending the conference. This turned out to be one of the highlights of my experience at Kyoto, as I began to search for my PwP community. A few months prior to the conference, I was informed that I was paired with a Japanese woman named Megumi, exactly my age, 55, who lived in Tokyo with her husband, Toyo, and their 20 year old daughter named Ai. We shared emails back and forth and agreed to meet the first morning of the conference. Going it alone, I was grateful to have her to meet, but was apprehensive because I didn’t know what to expect or whether we would connect.
When I arrived at the convention center, a 30 minute ride from my hotel, I was met with what felt like a long walk to check in, with jet lag making my gait very uncoordinated and slowing me down. Despite my gait problems and feeling exhausted (note to self: next time arrive to the destination a few days early to acclimate), I was excited to listen to the lectures and meet Megumi! When I finally checked in, I went straight to the main lobby and texted Megumi. Within 5 minutes she responded that she was coming to find me. I described what I was wearing and where I was sitting. A minute later, I found myself in a hugging embrace with Megumi. Her daughter and husband were also there volunteering. From that moment through the remainder of the conference, we were inseparable. We attended many lectures, exercise classes,yoga and dance and even got reiki treatments and massages. We ate our meals together and, despite the language barrier, managed to form a connection, with the help of translation from Ai and Toyo. After 2 days together, we felt like family. They looked after me and we assured each other that we would gather again in Tokyo at the end of my hiking trip. Sure enough, they took me all over their city and we shared meals together as well as many laughs. This was June 2019 and they hoped to plan a trip to New York City that September. We didn’t have to say goodbye but rather ‘see you soon’ as we did that September in New York. They came to my home for dinner, we took a NIA and boxing class together, and we walked through Central Park. Since then, we have been corresponding regularly, doing zoom yoga classes together during quarantine and checking in with one another during the Covid-19 year.
When I returned home from the Kyoto conference, I was compelled to get more involved. At the conference, I attended a Young Onset Parkinson’s (YOPD) workshop, which resonated with me and opened my eyes to a whole world out there of people just like me—people living with PD at a young age and many moms like me trying to do our best not just to live well with Parkinson’s, but also to be advocates of PD, using our voices to raise awareness of how many people are living with Parkinson’s and the need for research to help find a cure for the disease. In January 2020, I became an Ambassador for the WPC in Barcelona June 7-10 2022. I work with an amazing team of individuals with Parkinson’s whose commitment and energy is unstoppable. Megumi and I have already made plans for our reunion in Barcelona!