Nearly 4200 in attendance from over 60 countries coming from as far away as South Africa, Australia, and Japan, everyone at the Forth World Parkinson’s Congress held in Portland Oregon was bound by a common thread. These statistics certainly are impressive but this one image, a photo by Anders M. Leines entitled This is Parkinson’s, captured the essence of the entire event. Mr. Anders M. Leines, who also suffers from PD, challenged the misconception that PD is predominantly an old person’s disease. It is simply not true.

I am not an “artsy” kind of guy but I was drawn to this piece. Normally, I would walk right by something like this but couldn’t help but notice the age and the words of each of these individuals that was captured under their story. Some more than others have adapted, some more than others have found peace, some more than others have experienced healing. I would encourage you to visit this site to see the entirety or Mr. Leines’ project and read the words and feel the emotions of each of these individuals. Now their story is connected to my story and my journey connected to theirs.

I will be the first to admit that these types of gatherings make me more than a little nervous. Seeing, and meeting, so many with the same condition as me at various stages of progression, can rattle anyone. After meeting a 65-year old who was diagnosed 15-years prior who appeared to be functioning at a high level and a 37-year old woman, diagnosed just a few years back displaying significant impairments, one thing is certain, there is very little commonality in the way PD affects people. In response, there are almost an equal number of ways that those with PD accepted and embrace their disease. What I thought would be a somber populous, was in fact one of community. Some came to connect with others with PD, others came looking for answers, then there were the health care professionals who came to educate and learn from others. If someone wanted to learn about the latest scientific advancements, this was the place.

I had a chance to interact with some of those looking for answers and I was left with a profound sense of amazement at the resilience of the human soul. I did not see bitterness, anger or shame; I saw perseverance, compassion and hope. I saw an elderly parent caring for their adult child and a spouse for their life long companion. I witnessed doctor’s and clinicians, volunteers from various PD-related foundations and pharmaceutical companies all trying to provide answers to those seeking relief. Some left with the questions they need to ask their healthcare providers; taking that first step in what will become a life-long journey.

I am so thankful to have been invited and grateful to be a part of this event. Lives were changed, mine certainly was.

Thanks for reading, liking and sharing,

Al and his faithful and loving caregiver.