It’s not every day that I can share the exciting news that someone I know is being honored by the White House, but on March 23, 2015, nine men and women were recognized as Champions of Change for Parkinson’s disease. Among them was my friend, Angela Robb, whose morning in the White House spotlight was in recognition of her efforts as an advocate for care partners.
One of the first things I learned when I became involved with my local Parkinson’s organization was to not refer to people as Parkinson patients because Parkinson’s is only a part of who they are. Instead we say that someone lives with the disease. Angela’s husband Karl lives with Parkinson’s disease but the reality is that they both do, and they will tell you that they are care partners for each other. Karl was aware of Parkinson’s symptoms at 17 but it took 6 years and 9 doctors for him to receive a diagnosis at 23. They met several years after his diagnosis and have been married for 19 years.
Both Angela and Karl are well-known nationally in the Parkinson’s community for their advocacy work. They help people living with Parkinson’s to connect with each other and share their ideas on how to live well with the disease. They also educate the public and government about Parkinson’s; for instance, the need for more research and ultimately a cure. Their involvement ranges from co-leaders for a local support group to being on the board of national Parkinson’s organizations such as the Parkinson’s Action Network. I’ve really only touched on a fraction of what they do.
Anyone who spends time with Angela and Karl will come away feeling upbeat and happy which may sound strange given that they are living with a chronic, progressive disease, but being positive and laughing a lot helps them to live well with it despite its unpredictable nature. They both inspire us all to live our best lives with joy, and compassion for others. Congratulations Angela (and Karl!) for this great honor. I know you’ve said how humbled you are by it as well as the people who were honored alongside you, but it is truly well-deserved.
Information about all the Champions of Change for Parkinson’s that were recognized can be found here on the Parkinson’s Action Network website.
Patients are People, too!
In the Parkinson’s community, there’s a lot of emphasis on medical treatments and research in order to live better with the disease, but there’s more to life and good health than medicine can provide. The Robbs show us how by example and in their advocacy, and you can read about how they do it on Karl’s website, A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease. He’s written a book by the same name.