Creating community. Creating community seems like such a fluffy, overused, non-essential phrase that can cause an involuntary roll of the eyes. Leave the “real” work of PD to the research organizations and to the physical therapy, and medical institutions, or so they say.
For those navigating the narrowing, darkening halls of a chronic illness such as Parkinson’s Disease – we say, no way!
Don’t get us wrong, these resources and activities are very important and are a valuable part of every person with PD’s journey, but it should not stop there! Unless something has happened in the last 5 minutes, there’s no cure for PD – which means this disease continues to be life-long (and it is not a death sentence). We all have to figure out how to live our lives to the fullest and how to continue nurturing the people we do life with. It’s about living together today!
Several authors have stated that the greatest social epidemic in American life is loneliness – and that’s without a chronic illness on board. In fact, there is research that shows that there is a direct connection between socialization and brain health.
We wouldn’t think of missing a conference that would educate us, again, on the ins/outs of PD. We wouldn’t think of missing the gym and completing our exercise routines. We wouldn’t think of not taking prescribed medications. But we’ll drop community building, networking and socializing in a minute because it’s “not that important”.
In the original introduction to Harold Kushner’s book, When Bad Things Happen to Good People, the author describes a pain experiment that was conducted to measure people’s pain tolerance. The instrument of pain in this case was a vessel of ice water. Pain tolerance was measured in the length of time that the person in pain could hold their foot/hand in the ice water. Without fail, when the person in pain had someone present in the room with them, they lasted TWICE as long as people who were suffering alone. There didn’t have to be any interactions between the participants – someone just had to be present.
PMDAlliance is that person in the room; present, aware, a sometimes silent cheerleader or a roaring advocate depending on the situation. The focus of PMDAlliance is to build capacity in communities and support not just the person with the disease but also the solar system around them. How do we do that? As the leader in developing practical, simple and accessible toolkits we offer live-stream training, support and networking activities across the country and in Europe.
People with PD and the people who love and care for them need a space to build genuine relationships, practical, simple tools and a place to have honest discussions and be able to nurture the people we do life with. We have toolkits for people running or interested in running support groups, adult children of people with PD, care partners and assisted living, skilled nursing facilities.
Care partners, family members, support group leaders, physicians, physical therapists, speech therapists, nurse practitioners and therapists are all valuable team players. Parkinson’s disease is truly a team sport! That team needs support and coaching on a regular basis, with just as much attention and care as one makes dopamine replacement therapy a priority.
People with PD need to know that their care partners, family members and support group leaders are getting the best education, support and connection that they can get. As corny as it might seem, our PD team is only as strong as its weakest link. PMDAlliance is out there every day, partnering with you to build capacity in your own community.
Sarah Jones MPA, MS, is Chief Executive Officer of the Parkinson & Movement Disorder Alliance (PMDAlliance). They have been an Organizational Partner with the World Parkinson Coalition since 2015. Want to learn more about the toolkits or how we can partner with you to create community near you? Contact us at info@PMDAlliance.org or 800-256-0966
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®