Davis Phinney Foundation Ambassadors are at the heart of what we do. From speaking with individuals and families to presenting at conferences, sharing resources through exhibit tables, and participating in local, regional, and national advocacy, our Ambassadors are active, passionate volunteers changing how people live with Parkinson’s. Each day, they demonstrate what living well with Parkinson’s looks like and being a support system and resource for those in need of one.
In this post, we’re sharing two stories by Davis Phinney Foundation Ambassadors Carol Clupny and Kerry Howard, who describe meeting a fellow Ambassador in an unexpected place and the instant camaraderie that was present.
Travelers record their experiences in different ways. I have seen elaborate scrapbooks, slideshows, photo albums, and hand-drawn pictures accompanied by journal posts. I do not fit the title of scrapbooker or wildlife photographer. I am a minimalist collector. The limited number of photos I have I kept over the years have people and a story in the scenes.
The souvenirs I bring home are memories of conversations, stories told, and friendships formed.
I have been affiliated with the Davis Phinney Foundation for three years. The “home” team based in Colorado provides direction and encouragement to me. The Victory Summit® Events (in person and virtual), videos, and reading materials available on the Davis Phinney Foundation website have given me resources on any topic. Yet the most valuable resource I have discovered and use most often are the amazing people who serve as Ambassadors. These people have close connections with Parkinson’s, as they are care partners, health professionals, or people with Parkinson’s themselves.
There is no question about it: Davis Phinney Foundation Ambassadors are the real deal.
Because I know I will be welcome, I make an effort to contact Ambassadors while traveling. In spite of the pandemic, I have managed to meet 10 Ambassadors in the flesh. Some visits were two-hour conversations, and during others, we stayed up late into the night talking.
The most recent visit was with the delightful and multi-talented Kerry Howard. When I knew my travels would take me to Juneau, Alaska, I asked if she would like to meet up. Kerry had a bit of a drive to meet me at the Mendenhall Glacier. It was pouring rain, but as we had the proper clothing for outdoor adventures, we were not deterred from our walk.
Our conversation reached into the corners of our lives. We recalled what it meant to receive a game-changing diagnosis. And we discussed what we as Ambassadors could do in our rural areas to support the newly diagnosed and those in more advanced stages.
It was a sad but sweet parting. After looking in in each other’s eyes and hugging hard, we said our goodbyes. I thought about the rich and varied skills Kerry has to share with other Ambassadors and the Parkinson’s in her part of Alaska.
And then my next thought…one I have often: if I had not been diagnosed, I would not have met this new friend.
Although we come from all locales and all walks of life, Ambassadors automatically have at least two things in common: 1. We have, or care for, someone with Parkinson’s; and 2. We’re exploring ways to live better with Parkinson’s. With just these two elements in common, when Ambassadors meet, they have a lot to talk about!
That was the case when Carol Clupny and I met for a walk in Juneau, Alaska, on June 3of this year. Carol and her husband, Charlie, were in Juneau en route to the nearby community of Gustavus for a fishing trip. Carol, who is very good at making connections, reached out to me for some advice about Gustavus and to plan a time we could meet.
Spring had been abnormally wet in Juneau—we were breaking rainfall records left and right. Carol and I had decided to meet at the Mendenhall Glacier for a two-mile hike to Nugget Falls. The weather that day was 49 degrees with a light drizzle, and the lake was higher than usual because of all the rain. I worried that Carol, who comes from hot and dry eastern Oregon, might cancel the walk. However, upon first meeting her, I made a comment, “Too bad it’s raining,” to which Carol and her husband said, “We love it!”
Concerns allayed, we began our walk and our conversation. We talked non-stop about common topics of interest. Since we both live in rural areas, we talked about the challenges of living in a smaller community and the new “How to Thrive as a Rural Ambassador” Task Force that the Davis Phinney Foundation is convening. Carol and I have both applied to participate.
That led to a broader discussion about Ambassador duties, and I asked Carol about what she does in her Ambassador role. As a fairly new Ambassador whose first year aligned with the arrival of COVID, I told her I was still working to figure out what I could contribute in my DPF Ambassador role. Carol openly described all her activities and outreach efforts in some detail, which helped put commitments and efforts in perspective for me.
And, of course, we each shared the story about our diagnosis and how that has affected our lives. There is something freeing about discussing your symptoms, hopes, joys, and fears with someone who knows firsthand what you mean. Both Carol and I are determined to live as well as we can which, for both of us, includes staying active! Carol walks—boy, does she walk!—and then she finds the time to write an inspirational book about it! I also walk every day, always with a camera in hand, because that is what inspires me—capturing the natural world in photos to share the beauty with others.
We’ve both been lucky to meet other Davis Phinney Foundation Ambassadors in person for one-on-one discussions, and encourage other Ambassadors to do so if they have the chance. The insights and camaraderie are predictably wonderful! Connections like this always make me think of a short poem I dearly love by Adam Lindsay Gordon, Australian poet:
“Life is mostly froth and bubble,
Two things stand like stone.
Kindness in another’s trouble,
Courage in your own.”
learn more about our ambassadors
Click here to learn more about the Davis Phinney Foundation Ambassador Program and how to connect with Ambassadors near (or far!) from you.