by Ken Aidekman
According to Brooklyn Parkinson Group’s founding director, Olie Westheimer, opportunities to socialize and communicate face-to-face provide a way for people with Parkinson’s to improve their quality of life. BPG’s programs and events embody this belief.
The worst thing that a person with Parkinson’s can do is give up. Unfortunately, it is all too easy to slide, bit-by-bit, into that mind-set.
I know a woman in her eighties who does not have PD, but she suffers with constant pain, frailty and poor cognition. She is terrified of falling, but she refuses to use a walker. Her assisted living facility offers myriad educational classes, performances, art studios and exercise sessions, but she won’t take advantage of them. She is extremely creative when it comes to finding an excuse to avoid participating in activities that might involve spending time with other residents.
This woman has all but given up. She is preoccupied with her own misery and sense of mortality. We all know someone who lives this nightmare. And people with Parkinson’s may actually be more susceptible to it because apathy and depression are common symptoms of PD. But, there are ways to fight back.
An under-appreciated key to maintaining enjoyable quality of life is good socialization. It may not be easy. Along with all the other issues that PWPs face, simply socializing with family and friends and taking advantage of stimulating activities can be challenging because of impaired movement, soft speech and a reduced range of facial gestures.
Perhaps some hermits and artists choose to live alone, but they are the exception that proves the rule. The overwhelming majority of us enjoy being with other people. We thrive in their company. We excel at social exchange. It is one reason our species is so successful.
Our social links also define our lives. Taken out of our social environment we are less than fully developed human beings. Our health can be adversely affected. Without social communication our thoughts may turn inward in a negative way. When this occurs with PWPs, the depression and apathy symptomatic of PD can is exacerbated and can takeover.
After seeing the November Dance for PD performance, I came to a better understanding of how BPG incorporates therapeutic exercise and social interaction to provide more than basic therapy. BPG provides “joy training”. If you are in synch with your activity you experience joy during and after each session. It’s a social event and it’s fun. That joy brings you back for more. There is no benefit to therapy if you do not stick with it. The focus of BPG is on promoting enjoyment first, even before considering any impact on Parkinson’s.
Every time class participants hold hands and look into one another’s eyes they are increasing the social connective tissue of the group. Strengthening the group, in turn, helps to reinforce the strength of each individual in the group. Group members come to rely on one another for the benefits of socialization. That’s a good thing. Of course, it helps to have group facilitators who are true professionals and empathetic, but the group itself plays an important role in creating the joy.
While I have no research findings to prove it, I suspect “joy training” has another benefit. It is likely that enjoying an experience is a natural way to increase the release of dopamine in the brain.
Researchers agree that PD has a far stronger placebo effect than what is observed in other medical conditions. This means that your anticipation of alleviation of symptoms under a new treatment regimen actually helps alleviate those symptoms. Some researchers have argued that the mental state of expecting benefits from an experimental treatment actually triggers the release of more dopamine in the brain. There is hardly a more convincing argument for the value of sustaining a positive mental state in treating a medical condition.
How and what we think has very real consequences in the battle with PD. If just expecting positive results can improve your PD symptoms, imagine what negative thinking does!
Regardless of the scientific evidence, if you derive some joy from your BPG activity and it’s enough to make you come back for more, you have already scored a victory in your battle with Parkinson’s. Keep up the good work!