Say hello to Jeff, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Since he was diagnosed with Parkinson’s disease (PD) 20 years ago, Jeff does his best to stay active—in both exercise and advocacy.
Keeping up with his two teenage daughters is challenging enough, but when he’s up to it, Jeff also golfs, plays tennis and practices Tae Kwon Do (he’s a 3rd Degree Black Belt). And as an advocate for PD education, he’s participated in a panel discussion sponsored by Beth Israel and Deaconess Hospitals and given a presentation at Harvard Medical School.
Here, Jeff opens up about his biggest frustrations and encourages other patients to stay active and engaged.
What gives you the greatest joy and puts a smile on your face?
I have always enjoyed living life day by day and not taking myself too seriously. I believe that there many things that can be serious (i.e., health conditions, living conditions, world economics are a few), but people’s basic construct should be less serious. For example, watching my two daughters enjoy daily life at home puts a smile on my face.
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
A corollary to my not taking myself too seriously is my belief that the vast majority of people in a 1 to 1 relationship are compassionate and willing to learn about the day to day challenges of living with a disability. The challenge is keeping that compassion as we move from the individual to groups of people, larger organizations, etc. As groups grow in size, the compassion shrinks almost to nothing.
The one thing that I have the greatest frustration with is the frequent difficulty I have communicating with other people. My speaking ability can be so poor that I perceive my audience questions my mental faculties.
How has your condition impacted your social or family life?
My world in some ways has become smaller. My wife and I don’t go out as frequently as we once did, nor do we entertain at home as much. In either case, going out or entertaining at home has become a bigger responsibility for my wife. One of my PD off-periods can occur at any time and more occurrences happen during the evening than during the day causing additional work load for my wife.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
The voyage of Life continues. It is better to be an active participant than a sideline observer. Get engaged, exercise, do things. Don’t sit at home feeling sorry for yourself. Always take the extra step.
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