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The Joyce Oberdorf Interview (Page 2 of 3)

The Joyce Oberdorf Interview
President and Chief Executive Officer of the National Parkinson Foundation

Gary Barg: What kind of products or services do you think that somebody living with Parkinsonís needs to know about.

Joyce Oberdorf: Well, we think they need to know about a constellation of services and resources. They need to think of themselves as the CEO of their disease, and assemble people who can help them. And that team, that care team, is going to change.  It is going to change from maybe early diagnosis, when they might still be in the workplace. So their team may include a financial advisor, for example. It might include an expert on disability for when that time comes. It might include an expert movement disorder neurologist who is going to be able to do the best medication management available. And it might include a social worker to help with family issues, and with adapting to living with a chronic, neurogenic disease. It might include a neuropsychiatrist to deal with depression. It definitely should include physical exercise. And as time goes on, physical therapy to avoid the issues of gait and balance that could lead to falls, which could lead to fractures that are very debilitating. It could involve speech therapy. Everybody with Parkinsonís is impacted by their speech. And having a speech therapist that is trained with dealing with Parkinsonís. The one that has been tested with controlled research is the Lee Sullivan Voice Technique.

Speech therapy and multiple time speech therapy during the course of the disease because those things change, too. That can help people remain social, not feel isolated, feel like they are still part of their tribe, and it really is very helpful. So there is a whole care team that will form around patient-centered issues. And that care team will change as the disease changes, but there is a whole constellation of folks who could be helpful.

Gary Barg: I know NPF has launched a new campaign to raise awareness called ďWhatever It Takes to Beat Parkinson's.Ē I love the name. Can you tell me a little bit about what the campaign is and what you hope to accomplish with it?

Joyce Oberdorf: Well, we are so proud of our Whatever It Takes campaign. We really felt that there is a sense of empowerment with understanding that you are not this passive patient, the person with Parkinsonís, the family. There is a lot you can do that will impact your life and your quality of life, your wellness, your course of the disease. And we want to empower people with information, and also get them enthused about what they could do to take the reins themselves, and to feel empowered and hopeful. So our Whatever It TakesĒ campaign talks about 118 ways that you could help beat the disease if you are a person or a family member coping with Parkinsonís. It is everything from social interactions, you know, hug your grandkids, to attend a support group, to physical exercise, bicycling, to participate in clinical research studies.

Gary Barg: That is terrific. You know, we always say as a family caregiver, you are CEO of Caring for My Loved One, Inc. And this dovetails perfectly with the person living with Parkinsonís to be a CEO of their own care. How is dementia related to Parkinsonís different than what people experience with Alzheimerís or other dementias?

Listen to the Intervivew

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