Webinar Series: YOPD Council
(12 pm PDT, 2 pm CDT, 3 pm EDT, 8 pm BST)
Because of the unique challenges of living with YOPD, we want to increase awareness of YOPD, provide resources, and share stories to help people with YOPD live better today.
One way we’ve decided to do that is to create a YOPD Council. This council has been convened so members can share their experiences of living with YOPD. Join us each month for this ongoing webinar series.
Register for the Series
Sign up once for the series. To register, select “1” from the Quantity dropdown in the box below, fill in your information, and click Register Now. We will send you a reminder before each session. If you live outside of the U.S. or Canada and would like to register, click here.
Miss one of the previous session? Sign up in the Past Webinar Recording section below, and we’ll email you links to watch the previous sessions.
Upcoming webinars in this series
Thursday, October 15
Should you or shouldn’t you apply for disability? Short-term or long-term? Do you even have a choice? Applying and receiving disability benefits can be a complicated, confusing, and highly frustrating process. As can figuring out insurance, Medicare, and everything else that involves navigating the healthcare system. Luckily our Council has a lot to offer on these topics. During this session, the eight members of our Council will discuss:
- Long- and short-term disability
- Social security disability
- How to know what does and doesn’t qualify someone for disability (Just having Parkinson’s doesn’t do it)
- Long-term care coverage
- Coverage for care partner assistance
- What experts to seek out
- And much more
They’ll also be ready to take your questions and offer their best ideas on how to navigate the healthcare system with greater ease and results.
Thursday, November 19
Approximately 50-60% of people living with Parkinson’s experience varying levels of depression and anxiety. And nearly all deal with loss – whether it’s a loss of dreams, old ways of living and being, mobility, loved ones, etc. During this session, the eight members of our Council will discuss:
- How they have dealt with depression and anxiety
- Strategies that have worked and those that haven’t to get into a better headspace
- Tools for managing feelings of loss
- How to communicate issues of mental health to friends, family, and care teams
- How to manage anticipatory grief in yourself and others
- Ways to reframe expectations without settling for a life less lived
- And much more
They’ll also be ready to take your questions and share stories about how they maintain mental wellness in spite of living with Parkinson’s.
Thursday, December 17
One of the things that nobody ever tells you when you get a Parkinson’s diagnosis is how much of your time will be spent managing medications, adhering to schedules, and tracking side effects and symptoms. Hint: It’s a lot. During this session, the eight members of our Council will discuss:
- How they arrived at the best medication treatment for their situation
- Good and the bad medication stories and what they learned from them
- The role they play in getting the care they need
- How they manage side effects and when to know when medication is doing more harm than good
- Ways to reduce the number of pills you have to take every day
- The role medication plays in desire, drive, intimacy, sex, work, relationships, etc.
- And much more
They’ll also be ready to take your questions about medications and side effects and how to live well with Parkinson’s even when it feels like you spend your days taking pills.
Thursday, January 21
Past Webinar Recordings
Sign up to receive the recordings of past sessions by clicking on the Get the Recordings button below.
Recorded on Thursday, July 16
When it comes to Parkinson’s, there are plenty of uncomfortable conversations to be had. But talking about sex, sexual dysfunction, libido, intimacy, dating, and love may very well top the list. Which is why we’re leading off our new YOPD Council series with it.
During this session, the seven members of our Council discuss:
- What it’s like to date when you have Parkinson’s
- How Parkinson’s affects your desire, sexuality, and intimate relationships
- What to do when you’re experiencing sexual dysfunction
- How medication can impact your interest and libido and what to do about it
- How to turn uncomfortable conversations into growth points
- How not to get so overwhelmed and stressed out from trying to cope with your Parkinson’s that you give up on your intimate and sexual life
- And much more
Recorded on Thursday, August 20
One of the more difficult issues people who are diagnosed with Parkinson’s at a young age face is how they are going to manage their work life. During this session, the eight members of our Council will discuss:
- How (and if) to share your diagnosis with your boss and colleagues
- How to continue working and still do all it takes to live well with Parkinson’s
- How to plan for an uncertain future of employment
- How to advocate for yourself at work
- How to change careers and/or find more meaning along your career path
- And much more
They’ll also be ready to take your questions on any and all work and meaning-making issues.
Exercise, Community, and Parkinson’s
Recorded on Thursday, September 17
Research has shown again and again that daily vigorous exercise and connecting with others are two actions we can take that WILL help us live well with Parkinson’s. But, what happens when knowing something isn’t enough. What happens when the desire, motivation, time, and drive just aren’t there? During this session, the eight members of our Council discussed:
- How to start an exercise program when you haven’t exercised in years, or maybe ever
- Tiny habits that can make or break your exercise routine
- Why social connections and building community are so crucial (and what to do when a virus blocks your way forward)
- Ways to connect that even the most introverted can get behind
- How to know when exercise is too much or not enough
- And much more
They’ll also be ready to take your questions and offer their best ideas on how to exercise and connect to live well with Parkinson’s.
YOPD Council LEADERS
Gaynor trained as a journalist and ran her own PR and marketing agency before being diagnosed with YOPD at the age of 42 in 2012. She soon learned that the condition was very different from that experience by those diagnosed at an older age and that the younger Parkinson’s community largely existed under the radar – many misunderstood, some misdiagnosed.
In January 2016 she launched Spotlight YOPD – the only registered charity in the world that represents and focuses on the specific needs of those diagnosed under the age of 50. The following year Spotlight YOPD was integral in having YOPD debated in the House of Commons. Gaynor is also the newsletter editor for Parkinson’s Movement and works closely with The Cure Parkinson’s Trust.
Kat is from Portland, Oregon, where she lives with her husband and Yorkshire terrier “Baxter.” She believes that we can choose joy in our lives no matter what we’re faced with. Movement, mindfulness, and gratitude help her navigate the challenges of living with Parkinson’s. She is a retired nurse-midwife and delivered over 800 babies in her career. Now in her second act, she’s a Davis Phinney Foundation Ambassador, author, speaker, and advocate for living well with Parkinson’s.
Steve was diagnosed with Parkinson’s in 2007 at the age of 50. At that time, he didn’t know anyone with Parkinson’s; so, he and his wife Nancy took it upon themselves to learn as much as they could about Parkinson’s symptoms and treatment. Their search soon led them to the Davis Phinney Foundation, where they learned about the importance of exercise and a healthy lifestyle, something Steve credits as significantly impacting the quality of life he continues to enjoy.
Now semi-retired, Steve continues to work part time as a business consultant and as a Parkinson’s advocate as a Davis Phinney Foundation Ambassador. “When I was diagnosed, the focus of the treatment was on medicine. The doctors never mentioned the benefits of dealing with Parkinson’s on a more holistic level – exercise, good nutrition, and a healthy lifestyle,” Steve says. “Though [things are] getting better, there are still too many people who haven’t gotten the message.”
Heather is the founder of Kathleen Kiddo, an advocacy site offering resources and connection through social media. An entertaining speaker known for her unique talks and film presentations about living well with Parkinson’s, Heather writes from her home near San Francisco, CA. Since her diagnosis in 2011, she has collaborated with organizations such as the Davis Phinney Foundation, The Cure Parkinson’s Trust, and The World Parkinson’s Congress. In 2020, Heather expects to release two books, one on how to approach grief and a vivid collection of short stories.
Kevin brings deep experience as a biopharmaceutical executive to the board of directors of the Davis Phinney Foundation and the Parkinson’s community. Today, he is the Head of Patient Engagement at Theravance Biopharma in the Bay Area and just recently set new roots in Boulder, Colorado. Previously, he was a partner at a leading executive recruiting firm, where he led the North American Life Science practice. Kevin earned his doctorate degree in clinical pharmacy from the University of Michigan (GO Blue) and his family resided in nearby Midland.
An avid lifelong wannabe athlete, Kevin was diagnosed with Parkinson’s in in his late 40s. He has taken control of his Parkinson’s with bold irreverence, optimism, and biting humor. As a self-proclaimed amateur “PD satirist,” he has been a speaker and patient advocate for several foundations and has been featured on national news programs and webcasts, speaking about living a high-impact life, thanks to traditional therapies and a “zen-aggressive lifestyle.”
Once Erin was diagnosed with Parkinson’s, she turned to the internet to find answers and support. Frustrated with what she found, a chance LinkedIn search led her to a gentleman who lived five minutes from her. He introduced her to InMotion where she participated in a Parkinson’s 101 class that involved reading, discussing, and learning from the Every Victory Counts® manual. For the first time since her diagnosis, Erin saw hope and, as a result, became a Davis Phinney Foundation Ambassador so she can bring that hope to others.
Erin is passionate about helping people with Parkinson’s live better physically, mentally, and emotionally. Through helping others, Erin is helping herself view her own challenges through a different lens and finding peace in a way she never predicted.
Amy was diagnosed with Parkinson’s at the age of 48. Through the strong medical and support networks for people with Parkinson’s in the Philadelphia area, Amy learned how to rely on exercise, stress management, and other wellness tools to help her live well with her diagnosis.
To her, living well with Parkinson’s means not giving up your enjoyment of life and fully engaging with the world in a way that uses your own special purpose and energy to its highest potential. Finding purpose and meaning in her own life post-diagnosis led Amy to help people with Parkinson’s and their care partners navigate employment, as well as find volunteer work or creative projects to discover their own personal adventures. For Amy, choosing to become a Davis Phinney Foundation Ambassador helps her to spread the message that it is possible to live well with Parkinson’s to even more people.
On a perfect Sunday morning, you can find Amy going on a hike with her dog Dylan, meeting her husband in a café, and ending the day spending time with her two teenage daughters.
Tom was diagnosed with Parkinson’s in 2008 at age 48. While balancing his professional and personal life with the onset of symptoms, he sought to meet the challenges of PD head on with curiosity, practicality, and optimism. Volunteering at the local Parkinson’s support organization led him to New York and on to Washington DC, serving as Chair of the Parkinson’s Foundation, People with Parkinson’s Advisory Council (PPAC), and representing the needs and interests of the PD community to Congressional leaders.
“As an ambassador and advocate, I stay alert and active, but good health and fitness is key, and maybe as important as any medication or PD treatment,” says Tom. He leads a Pedaling for Parkinson’s class at the local recreation center near his home, and helped establish a boxing class for People with PD. With the pandemic, he offers an online version of the indoor cycling class, leading as many as 20 riders from throughout the United States.
In June 2019, he launched the Tour de Victory Cycling Classic — an organized cycling event to benefit the Davis Phinney Foundation. In its first year, the event brought in more than $70,000. He enjoys cycling, fly fishing, and traveling the world with his wife, Jeanette, and spending as much time as they can with their adult children Emily and Mitch.