People with Parkinson’s disease often experience sleep-related issues that can significantly impact their quality of life. Dr. Michelle Dagostine, a Movement Disorders Specialist at Hartford HealthCare, will discusses sleep science and sleep issues commonly associated with PD.
Our Program Advisory Council member, Cathie Baker, lives with Parkinson’s and knows well how important exercise is to help improve symptoms of the disease. She was tapped to share her experience in a recent AARP Health article, about what Parkinson’s disease is and how treatments and exercise can improve symptoms for people with PD.
We are proud to announce our new host for On Time: A Parkinson’s Podcast, Larry Gifford!
Larry is a rock star in the Parkinson’s community, tirelessly advocating for PwP in person and online, co-founding PD Avengers, which BGF is honored to be one of “The Original PD Avengers!”
As a seasoned leader in broadcasting and host of his own podcast, When Life Gives You Parkinson’s, he is a great fit for the job. This year, On Time: A Parkinson’s Podcast is in its fifth season launching April 1, 2024, Larry will lead conversations on a topic he champions: the stigma around Parkinson’s.
More About Larry Gifford
At the age of 45, Larry Gifford received the diagnosis of Parkinson’s in 2017. Since then, he has emerged as an ardent advocate and activist for the cause. Co-founding the Global Alliance to End Parkinson’s, also recognized as PD Avengers, Larry has committed himself to raising awareness and striving for a world free of Parkinson’s. In October 2023, he underwent a significant DBS surgery, marking a pivotal moment in his journey.
Larry’s impact extends to various fronts—he serves as a cohost of the When Life Gives You Parkinson’s Podcast, is a member of the Michael J. Fox Foundation, and holds a position on the editorial board for the Journal of Parkinson’s Disease. Through these roles, Larry plays a vital part in advancing knowledge and understanding within the Parkinson’s community. His dedication to research is evident through his contributions, including co-authoring three published papers that offer valuable insights. Transitioning from a distinguished 30-year career in radio, Larry currently calls Vancouver, B.C., Canada, home. Alongside his wife and partner-in-Parkinson’s, Rebecca, and their son Henry, Larry continues to make impactful strides in the Parkinson’s advocacy space.
Track Your Symptoms with StrivePD
In our January Wellness Webcast: PD 101, Dr. Joseph Quinn, Director from the OHSU Parkinson Center and Movement Disorders Program provided an overview of Parkinson’s and its symptoms. Educating yourself with webcasts like this and having conversations with providers are important in understanding the impacts of Parkinson’s and available treatment options. Tracking factors like medications, exercise, and nutrition and how these things interact with your symptoms is also key to managing your care and can provide you with vital information to share with your care team.
StrivePD is a free iOS disease management application — FDA-cleared on the Apple Watch — that passively collects daily resting tremor and dyskinesia data via Apple’s Movement Disorder API. StrivePD allows you to get a better understanding of what factors influence your symptoms such as medications, diet and exercise. Through the app you can:
Automatically record your symptoms via the Apple Watch.
Explore interactive charts to track your symptoms over time and understand how medications and physical activity impact you.
Share data with your care team (including your Rock Steady Boxing coach and physical therapist) to improve your communication and treatment strategy.
People who have used StrivePD report that it’s easy to use to log and track symptoms. StrivePD summarizes different data sources for people with PD that can be easily shared with their care teams. This data includes:
Passively collected Apple Watch data (sleep, mobility, fall detection, gait, and tremor and dyskinesia).
Self-reported data (medication schedule and self-reported symptoms from StrivePD app). Clinical data (your disease history and medications).
The benefits you’ll receive from downloading the StrivePD app include:
Insights into your symptoms to help guide conversations with your providers: With StrivePD, you can receive real-time objective feedback of your tremor and dyskinesia, recorded by the Apple Watch. Similar to how a closed-loop continuous glucose monitor captures data for people with Diabetes, StrivePD transforms Parkinson’s disease management. The data collected by Apple Watch can help you have better conversations with your doctor to develop more personalized care strategies. You can also explore the interactive charts to track your symptoms over time and understand how medications and physical activity impact you.
Activity logging to keep you motivated: StrivePD also has features to log your physical activity. You can even keep track of your weekly Rock Steady Boxing classes! By tracking your physical activity and symptoms, you can better understand the impact of daily exercise on your well-being and disease progression. This is a great way to help you stay motivated to exercise!
Education about Parkinson’s: StrivePD also helps you learn more about Parkinson’s disease and the different ways it can affect your body. It explains motor symptoms such as tremors, slowed movement, stiffness (feeling tight or rigid), and balance issues. By understanding these symptoms, you can have a better idea of what you’re experiencing and how to define it.
Hear what users are saying: One user said, “I’ve been using StrivePD for about six months, and what I love about StrivePD is I can use the app to help track my symptoms, physical activity, and medications. It is amazing that all my data is just passively collected. All I need to do is make sure I have my Apple Watch on my wrist and I’m good to go… Like most patients, having PD terrifies me. But if there is some way we can slow down progression, or maybe even reverse some of the movement problems, that’s a huge win in my book. Both Rock Steady Boxing and StrivePD are empowering me to manage PD.”
Another user said: “While Parkinson’s remains a struggle, StrivePD has helped me realize the importance of exercise and how it dramatically reduces my mobility issues. It motivates me to stretch, lift weights, complete core workouts and visit my physical therapist twice a week. Exercise has dramatically reduced my symptoms and helps me control them.”
Our January 2024 Wellness Webcast features Dr. Joseph Quinn, Director, OHSU Parkinson Center and Movement Disorders Program. Whether you’re a newly diagnosed patient, a caregiver, or simply interested in learning more, this webcast will provide an overview of Parkinson’s disease.
Like many of our Program Advisor Council members, Lynn Hubert, has connected with many people living with Parkinson’s and their care partners in our community. One of those individuals is Lloyd Transue, a care partner for his wife, Anne Transue, who was diagnosed in 2014 and passed away in October this year. Anne grew up in Albany, Oregon, graduated from OSU in 1963 with a degree in Elementary Education, and taught 1st grade for the next 26 years.
Lynn shares that Lloyd maintained a supportive and loving environment throughout her journey. In memory of Anne, he is donating the funds from the sale of shirts he designed to causes Anne cared about, including the Brian Grant Foundation. Click hereto find out how you can help.
Music therapy has shown to improve the quality of life for individuals living with Parkinson’s by addressing various physical, emotional, and cognitive aspects of PD. Maggie Johnson, MT-BC, a Licensed Music Therapist and Music Therapy Director with EarthTones NW leads a presentation, demonstration, and sing-a-long, followed by a Q&A.
Julia Robinson, M.S., CCC-SLP, Lauren McIntyre, PT, DPT, CSRS, Amy Dodson, OT discuss how occupational, physical, and speech therapy supports people living with Parkinson’s and ways these therapies can address the various aspects of fatigue management.
Our webcast panel discusses the importance of exercise and PD and how finding something you enjoy, like hiking and dance, can change your outlook on Parkinson’s. Our panelists include Nate Coomer, PT, DPT, NCS of The Parkinson’s Fitness Project, Chris Daigre of danceDaigre, and Derek Torrey of Pass to Pass.