While exercise is beneficial, sometimes everyday life takes precedence. After her husband’s stroke in 2011, Elaine spent more time with him and less time exercising. She noticed her symptoms increased, and everyday tasks took longer, leaving even less time in her day. Since her husband’s passing in March of this year, she has returned to exercise, attending Delay the Disease classes two days a week and working with a personal trainer two more days. “I participated in an aerobic walking research program at the University of Iowa in 2011, and I was doing very well at that greater intensity of physical activity,” notes Elaine. “You have to push yourself to do more intensive exercise, but it was helping.” She hopes to get back up to five days of exercise a week. Even with Elaine’s local activism and personal exercise program taking up much of her time, she is still able to advocate on a national level. Due to her previous experience in national politics, Elaine was asked to volunteer for the Parkinson’s Action Network (PAN). This organization is the national voice for the Parkinson’s community, with goals such as increasing funding for research, helping veterans whose war injuries have led to Parkinson’s, and advocating for a national registry for Parkinson’s and movement disorders. The last point will enable more accurate information about the incidence and prevalence of the disease, which is critical to understanding genetic and environmental risk factors. As a PAN member, Elaine receives updates on issues which affect the Parkinson’s community and is often urged to contact members of Congress to ask them to support legislation benefitting people with Parkinson’s. She also works on the planning committee for the Morris K. Udall Awards Dinner, an annual awards ceremony to honor people who have done great work in the Parkinson’s community. Elaine participates in conference calls to organize the fundraiser and travels to Washington, D.C., to attend. At the dinner, Diane Rehm from NPR’s The Diane Rehm Show, whose husband has Parkinson’s, interviews a person who has been influential in the Parkinson’s community. This year, she spoke with Dr. Oliver Sacks, noted neurologist and bestselling author of numerous books on people with neurological disorders. The dinner also raises funds to support the efforts of PAN. Elaine understands why some people with Parkinson’s hesitate to be involved in their community but still encourages others to persevere. “The hardest part is worrying what people will think of you if you are stooped over or shaking. 10
Left: Meeting Bill Clinton at Knox College in Galesburg, Illinois. Below: Elaine and Tom Vilsack
Left: Barack Obama Presidential Campaign in West Burlington, Iowa, in 2007
I know people who are active in communities that go out with their oxygen tanks, wheelchairs, walkers – what does it matter if my hand is trembling? I am inspired by Mohammed Ali and Michael J. Fox. It would be easy for them to hide out as they are not at the top of their game anymore. But they have done the opposite. They’ve really set an example of how to live an involved life despite Parkinson’s.” While the extent of her activities may sound exhausting, Elaine is adamant that it is essential to her well-being. “As my disease has progressed, I’ve been amazed at the kindness of others, which has inspired me to pass it forward. With my husband’s passing, it had not been a happy year, but when I was planning the Michael J. Fox Show party, I woke up happy every morning. The more I get involved in helping other people, the happier it makes me. Being involved in my community lifts my spirits, and it helps me deal with Parkinson’s.” Delay the Disease class in Burlington, Iowa led by Matthew Kelley, personal trainer at Great River Health System.