In addition to advice and strategies from many of the world’s leading Parkinson’s experts, the newest edition of our Every Victory Counts manual features new stories and testimonials from dozens of people living with Parkinson’s. Here, we’ll highlight a few of the Davis Phinney Foundation Ambassadors who share their living-well advice in the manual, and how you can get in touch with them to learn more. See the first post in this series here.
Amy Carlson, Becoming "An Exerciser"
"I was never a dancer. A klutz? Yes. A dancer, No. And then, Parkinson’s...And then, to add insult to injury, I learned that I needed to exercise. No thanks! It’s not that I wasn’t an active person. At the time, there wasn’t a double black diamond run that I wouldn’t try, but I didn’t think of skiing, snowboarding, waterskiing, or hiking as exercise. Those were fun things. The word 'exercise' recalled images of being pelted with balls in a gym class dodgeball game. Or maybe being struck out at the plate yet again during softball in middle school." Learn how Amy found the ideal exercise for her in Chapter 9 of the Every Victory Counts manual, and reach out to her here.
michelle lane, helping children understand parkinson's
“When I was diagnosed with Parkinson’s in 2000, I first thought of my three children and of how my diagnosis would impact them. How would I tell them? Would I be able to help my daughter fix her hair and make-up? Would I be able to walk at their graduations and weddings? At first, I chose not to share my diagnosis with my children, but I soon realized that I had to tell the older two – Kyle (9) and Erik (6). Their first question was, 'Are you going to die? I reassured them that Parkinson’s was not fatal but that sometimes I might need help with small tasks. At the time, neither child asked many questions and seemed relieved to know that I was 'okay.'” Read how Michelle navigated the path of Parkinson's with her children in Chapter 13 of the Every Victory Counts manual, and reach out to her here.
Marty Acevedo, Eating to live well
“Naturally, my science and medical background led me to research every aspect of Parkinson’s, including nutrition. I quickly concluded that a lifestyle that included intake of fresh fruits and vegetables, lean meats and more fish, whole grains, lower-fat dairy products, and moderate intake of sweets and alcohol would continue to serve me well. While my research delved into other 'diets,' such as keto, paleo, gluten-free, vegan, intermittent fasting, and other meal plans, I knew that a Mediterranean, plant-based diet made the most sense for me. After all, this was not a significant change for me and is consistent with my lifelong mantra that there are no 'bad' foods and that we should practice moderation in all things, including our nutritional intake.” Read more from Marty about eating to live well with Parkinson's in Chapter 11, and reach out to her here.
Edie Anderson, Finding "your happy"
"When I was diagnosed with Parkinson’s, I was anything but happy. Like so many others following diagnosis, I allowed depression and despair to fill my heart. In the world of chronic illness, we call this a “pity party” — an odd term because it’s not a party at all as there’s only one guest, no games, and no cake! Almost everyone I’ve met on my Parkinson’s journey has been to one of these parties. While some stopped in briefly, I was trapped for a year before I found the “exit,” and once I was out, I was happy again." Read how Edie "found her happy" in Chapter 12 of the Every Victory Counts manual, and reach out to her here.
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Thank you to our 2022 Peak Partners, Amneal, Kyowa Kirin, and Sunovion, as well as our Every Victory Counts Gold Sponsor AbbVie Grants, Silver Sponsor Lundbeck, and Bronze Sponsors Supernus and Theravance for helping us provide the Every Victory Counts manual to our community for free.