In September, I went to the 4th World Parkinson’s Congress in Portland, Oregon. It was a fantastic event attended by over 4,600 people from 67 countries. There were many engaging speakers who shared their knowledge and opinions on a variety of Parkinson’s-related topics. From the latest developments in stem-cell research to the best dietary choices, pretty much all aspects of Parkinson’s were covered during the four-day Congress.
Whilst the talks were the main focus of the Congress, other events were also popular. The Renewal Room had an exciting schedule of activities that ranged from Tai Chi and yoga to dancing and drumming. There was a Book Nook that displayed a range of PD literature and stories, mostly written by people with Parkinson’s. The WPC theatre, with its daily shows of song and dance, was a great space to unwind amidst the many talks and lectures.
There was also the Art Walk, a new feature of this year’s Congress. One exhibition really stood out for me: Anders M. Leines, a Norwegian photographer with Parkinson’s, had assembled a series of portraits and accompanying text entitled “This is Parkinson’s”. This simple but captivating exhibition of photos and personal statements highlighted young people living with Parkinson’s and dispelled the myth that Parkinson’s only affects individuals over 60.
As well as attending talks and the various activities, I also spoke to people with Parkinson’s and we shared our views on living with the condition. I saw a pattern in those that I listened to; the most common symptoms they struggled with were the non-motor symptoms like sleep disturbances, depression, apathy, cognitive issues and behavioural changes, to name a few.
It got me thinking: can we really define Parkinson’s Disease as a movement disorder, when it affects so many of our faculties? I don’t think so. We have to accept the fact that Parkinson’s affects our minds as much as (if not more than) our bodies. The thing that stood out for me in our discussions was not the specific difficulties individuals have, but the overall effect Parkinson’s had on them and their families and how they manage lives that have been irreversibly changed.
This is what I ultimately took away from the Congress: as a person with Parkinson’s, it seems to me that how we think and feel is more important than how we walk or write. So let’s look after our emotional well-being, because I believe if we do that, it will set us on the right path to achieving contentment, no matter what our physical limitations may be.