Community seems to be an important buzzword these days. I think people, in general, are recognizing that social structures have been deteriorating and that people want more of a sense of connection with others. My research shows that ‘intentional communities’ have been working on this problem since the early 19th century. An intentional community can serve as an umbrella term for many types of communities, for example, collective living for co-housing.
My question is what is it that connects these groups? What does community mean? After hearing some wonderful and powerful stories about the energies of different communities, I had more warmth in my heart and tears in my eyes. It made me realize how important it is to come together as a Parkinson’s community. Communities are about sharing, connecting, and even healing.
Whether one likes it or not, once one gets a diagnosis of Parkinson’s they have joined one definition of community, that is, we all have a particular characteristic in common. What will this mean? What makes a Parkinson’s community?
PWP started off with just 2 members of our community. I was diagnosed and was looking for social, medical, and healthy support. Being a physiotherapist, I knew that exercise was a huge part of good health. I felt awkward going to a community centre that included the general population. As we all know, Parkinson’s is very complicated and our symptoms can be very strange. We are not always understood by the general public.
It wasn’t until our group started to grow that it became even more evident that we would be better off with our own community centre. We were a grassroots organization developing new leadership where none existed, and I can say we were organizing the unorganized! It took an amazing amount of perseverance by so many people that were forming our PWP community to get to where we are now. I thank each and every one of you on the board and those who have come to classes to build our community.
We have discovered that what really matters is that it’s a safe place to be honest and humble, as we are all a piece of the big puzzle. Research shows that people with Parkinson’s are able to get better and stay better. However, we cannot do this on our own. We need leaders in the Parkinson’s community to recognize that it is a 24/7 battle for us to defeat the isolation that our symptoms bring on. Isolation from friends and loved ones can prevent us from living a full, rich life.
We deserve access at diagnosis to proactive therapy, exercise, and enrichment approaches that are considered by more and more experts to be disease modifying. We can’t wait to access healthcare AFTER our mobility is compromised. With the proper tools, we will remain healthier longer, and we will contribute more fully to society.
WE recognized the dire need in the Parkinson’s patient community for sustainable therapeutic community centres that provide effective and diverse types of research based programming to address ongoing physical, social, and psychological health.
PWP has now been built. Our community is real. Our aim is to intensify minority outreach to currently underserved individuals with PD so that all benefit equally from services. Our community is up and running at our new location. We are ready for greater advocacy for support groups and similar activities that promote connection.
So, what does community mean to me? It means being a part of something greater than me. It’s about sharing, growing, and opening up to who you are and what you believe in. Are you part of our community? If not, maybe now’s the time!