Webinar Series: YOPD Council

The Third Thursday of Every Month
1 – 2 pm Mountain Daylight Time
(12 pm PDT, 2 pm CDT, 3 pm EDT, 7 pm GMT)

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.

Upcoming webinars in this series

Q & A Session

Thursday, November 18, 2021

Past Webinar Recordings

Non-Motor Symptoms

Recorded on October 21, 2021

In this interactive question and answer session, our YOPD Council answered questions about Parkinson’s across a variety of topics including Non-Motor Symptoms.

Re-Upping Your Confidence: How to Disrupt Your Self-Limiting Behaviors

Recorded on September 16, 2021

In this interactive question and answer session, our YOPD Council answered questions about Parkinson’s across a variety of topics.

Q & A Session

Thursday, August 19, 2021 (Canceled)

Q & A Session

Recorded on July 15, 2021

In this interactive session, our YOPD Council addressed re-gaining confidence after a Parkinson’s diagnosis has impacted it.

Recorded on June 17, 2021

One of the most common questions we’re asked is this: “What should I eat now that I’ve been diagnosed with Parkinson’s?” The answer is that there is no one answer. Just as each person with Parkinson’s experiences different symptoms, each person reacts differently to different types of diets. During this session, our panel members, along with Marty Acevedo, a registered dietician who is living with Parkinson’s, talked about how food is medicine. 

Recorded on July 16, 2020.

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 August 20, 2020.

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.

Recorded on September 17, 2020.

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.

Recorded on October 15, 2020.

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 discussed:

  • 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.

Recorded on November 19, 2020.

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.

Recorded on December 17, 2020.

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.

Receiving a Parkinson’s diagnosis when you’re young is overwhelming enough as it is. Add the need to exercise daily, attend a variety of medical appointments, and focus on your mental health to an already busy work schedule and it can feel like too much. Plus, if you don’t love your current career path, or you do but the demands exceed your energy and ON time, the possibility of changing careers or shifting roles at your age might feel like a pipe dream. But it’s not.

In this webinar, our YOPD Council leaders will discuss:

  • How to evaluate your career with the Parkinson’s lens
  • How to evaluate new ideas
  • How to use your Parkinson’s community to network and learn about second, third, or even fourth act careers
  • How to bring more meaning to your current role
  • And more

Recorded on February 18, 2021

Living with a chronic illness means that over time you will have to endure many distressing symptoms, diminished mobility and functionality, and often social isolation. You may become more reliant on care partners as well, which can decrease your feelings of independence and self-efficacy. All of this can lead to feelings of depression, anxiety, grief, and feelings of loss. And if you don’t address these feelings, they can have a profound impact on how you feel physically.

In this webinar, our YOPD Council leaders will discuss:

    • How to find the bright side of Parkinson’s
    • Strategies for managing feelings of loss
    • Simple practices you can do to ease emotional pain and meet difficult emotions
    • How to manage anticipatory grief in yourself and others
    • How to re-channel your energies on things that bring you hope
    • Actions you can take to live well with Parkinson’s NOW
High Intensity Exercise and Training for Big Events

Thursday, March 18, 2021

Recorded on April 15, 2021

Did you know that dementia in people diagnosed with young onset Parkinson’s disease (YOPD) looks different than dementia in those diagnosed with later-onset Parkinson’s? In this webinar, Dr. Rodolfo Savica, MD, PhD, and YOPD Council Leader Tom Palizzi discussed dementia: what it is, how it develops, and its relationship to Parkinson’s, as well as some distinct differences between YOPD and later-onset Parkinson’s.

Sleep, Light, Nature, and Parkinson’s

Recorded on May 20, 2021

The human body was built to work in partnership with the sun. Its light can transform our moods, focus, sleep, energy levels, immune systems, bone density, and mental health. As a result, spending time in the sun can be particularly beneficial to people living with Parkinson’s who experience symptoms like depression, apathy, poor sleep, pain, and fatigue. During this session, our YOPD council members discussed all the ways sun and light help them live well with Parkinson’s. 

YOPD Council LEADERS

Karen Frank headshot
Karen Frank

Karen was diagnosed with Parkinson’s at age 47 in 2018. Following her diagnosis, Karen had to retire from her beloved career as a Certified Registered Nurse Anesthetist because of the challenges Parkinson’s presented when performing her job. Her unexpected early retirement opened the door for her to follow her passion to help others overcome challenges in their own lives.

No stranger to overcoming adversity, Karen proudly maintains longstanding sobriety after overcoming drug and alcohol addiction many years ago. Her own recovery experience set her on a path to become a peer advisor to other medical professionals experiencing similar life challenges. 
 
Karen now spends her time helping physicians and nurses who struggle with substance abuse. She is an active public speaker with the Missouri Physician Health Program and the Missouri State Medical Association where she speaks to groups of physicians about overcoming trauma and adversity and recovering from substance abuse within the medical profession. Karen started New Directions Coaching, where she mentors physicians and nurses who battle addiction, alcoholism, and other disorders.  
 
Karen brings this same passion for living well in her recovery to living well with Parkinson’s. She now serves as an Ambassador for the Davis Phinney Foundation and thrives when helping others embrace living well with Parkinson’s. More recently she has begun coaching people with Parkinson’s to improve their lives as they navigate living with chronic illness. Karen also formed and leads a YOPD support group for the St. Louis Chapter of the American Parkinson’s Disease Association.

Kat Hill headshot
Kat Hill

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 Hovey headshot
Steve Hovey

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 Kennedy headshot
Heather Kennedy

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 Kwok headshot
Kevin Kwok

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.”

Amy Montemarano headshot
Amy Montemarano

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.

Amy Montemarano headshot
Tom Palizzi

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.