My PD Story

Debra Flynn headshot
People with PD

Debra Flynn

Once upon a time, I started noticing a slight tremor in my right hand. My husband noticed that I did not move my right arm when jogging. I also suffered from frozen shoulder(s), insomnia, constipation, anxiety and fatigue for years.

Doctors continuously told me it was menopause related. Over time, the tremor became more noticeable, and my doctor suggested I see a neurologist, just to “be safe.”

I met with a movement disorders specialist — a neurologist with specialized training in movement disorders — and on November 11, 2015, she confirmed the diagnosis of Parkinson’s disease (PD). I will never forget that day. I was devastated and frightened.

At the suggestion of the movement disorder specialist, I signed up for the local young-onset Parkinson’s disease (YOPD) support group. I went to the first meeting and cried seeing how PD affects people. I cried every time I had to tell someone about the diagnosis. I cried thinking about how life had changed. I cried all the time. Through all this turmoil, my neurologist promised me that life was not over, but I had to take control, no matter how hard it got.

So, we took control. We retired early and moved to Florida. It is here that I signed up for Rock Steady Boxing. I am a fighter and have met the most amazing people at Rock Steady Boxing. I also attend spin classes and Pilates as part of my personal goal to keep on moving! It still felt like there was more I could do to change the trajectory of my life. Yep, there sure was. Enter Parkinson’s Foundation.

I connected with the Parkinson’s Foundation through Moving Day Chicago (my hometown). When we moved to Florida, I attended Moving Day Boca Raton and Palm Beach. I signed up for PD GENEration and three other clinical studies. I attended Foundation-sponsored seminars, which is where I met Karen Lopez and became involved in the local chapter.

Today I am a Parkinson’s Foundation Ambassador, a Board Member on the Fund Development team, and I was honored to be the Chair of a successful Moving Day Palm Beach 2024. I have also been part of our Regional Grant Review team for the past two years and I sign up for every relevant clinical trial.

I really enjoy volunteering. I see it as another way to celebrate movement. I move my brain cells around; I motivate my soul to do good things; and volunteering moves forward the search for a cure. Volunteering is really the most effective way to use one’s voice. Being awarded the Parkinson’s Foundation Community Service Award is the ultimate recognition of how important it is to advocate for ourselves and others affected by PD.

PD has changed my life. I am married to a host of medications governed by a time clock, and I deal with nasty and unpredictable symptoms, and it is truly humbling! However, living with Parkinson’s is also a true blessing in that it has given me the gift of friendship, support and has shown me the way to help advocate for others.

Explore the many ways to volunteer with the Parkinson’s Foundation. Fill out our volunteer interest form today.

My PD Story

Esther Labib-Kiyarash headshot
People with PD

Esther Labib-Kiyarash

“You don’t look like Parkinson’s.” That’s what the second neurologist told me, after the first simply asked “Have you ever thought about Parkinson’s?” I can honestly say up to that point, I never thought about Parkinson’s disease (PD). Ever. 

As a 47-year-old mother of two elementary school children, working full-time as a hospital administrator during a global pandemic, the idea of Parkinson’s seemed impossible.

I was diagnosed with young-onset Parkinson’s disease in 2023, officially. So, I did what any mom would do, I started posting about Parkinson’s on TikTok. Weird right? But that is where I met lots of amazing people just like me. Friends and mentors, who showed me that there is life with YOPD.

One of them, Mark Millow, suggested I volunteer with the Parkinson’s Foundation.  I jumped at the chance to channel my enthusiasm with educating myself and others about the disease on social media, to something more tangible.

Shortly after completing my Parkinson’s Foundation ambassador training, I was appointed to Southwest Chapter board. It was at this time I decided to leave my career behind and focus on volunteering and spending more time with my family.

Along the way I have learned that there are many things, tips and tricks that the people who live the best with this disease share: exercise, positive thinking, being around others like themselves and giving back. The Parkinson’s Foundation is a great way to give back.

I have a loving husband, amazing kids and live one day at a time. There is a lot to be grateful for. Gratitude is another secret weapon in fighting Parkinson’s.

I don’t care about small things anymore. Parkinson’s changed my priorities in many ways. It reminds you what is important in life. Friends, family, time spent outdoors, good food and lots of adventures — because no one knows what the future holds.

I love to travel and make magical memories with my kids before they become teenagers and don’t think I’m cool anymore. But they are very impressed when one of my social media posts goes viral.

I’m not grateful for Parkinson’s, but I do appreciate some of the things that came with it. I hate the disease, but I love the people with it.

Explore the many ways to volunteer with the Parkinson’s Foundation. Fill out our volunteer interest form today.

Educational Events

Let's Talk About It: Non-motor Symptoms

1:00 pm to 4:00 pm MDT
Free
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There are many non-motor challenges associated with Parkinson’s disease that may not always be easy to discuss. With a focus on non-motor symptoms, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.

Speakers:
Dana Sugar, MD, University of New Mexico

Sponsored by:

Seed for Success
More to Parkinson's

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

Parkinson’s Research and Care

10:00 am to 2:00 pm PDT
Free
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Parkinson's research is important to finding better treatments and improving care. At this program, attendees will learn about how research shapes treatments, about care strategies for managing Parkinson’s symptoms, and what’s new in research.

People with Parkinson’s and their loved ones are invited to join us for a resource fair, exercise demonstrations, table activities, raffles and giveaways, and lunch.

Registration, parking and meals are provided at no cost to attendees, but registration is required.

Speakers: Anny Lin, MD, UW Medicine; Pinky Agarwal, MD, Evergreen Health

Sponsored by:

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

Fitness Counts

10:00 am to 1:30 pm EST
Free
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Check-in and resource fair starts at 10 a.m.; Program starts 11:00 a.m.

Studies have demonstrated that exercise has brain and body benefits for people with Parkinson’s disease. Exercise can help to improve Parkinson’s symptoms and help individuals do the activities they enjoy. Learn that there are benefits to movement at all stages of Parkinson’s and that it is never too late to start.

Speakers

Erin Buckley, OTR/L
Central Virginia VA Health Care System

Cameron Gordon, PT, DPT
Veterans Healthcare Administration

Alyssa Yeary, PT, DPT, NCS
VCU Health

Margaret Preston
Power Over Parkinson's (POP)

Molly Cupka 
Up ENDing Parkinson’s

Lindsay Dawson, PT, DPT
Rock Steady Boxing Richmond

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.

Thank you to our Sponsor:

Kyowa Kirin
Educational Events

Hacia Adelante: Navegando el Mar del Parkinson

9:00 am to 2:00 pm PDT
Free
Hacia Adelante

Acompañe a la Parkinson’s Foundation en nuestro evento educativo en español para explorar formas de mantenerse motivado cuando se vive con Parkinson y disfrute de una feria de recursos, baile, almuerzo, juegos, rifas, oportunidades de investigación in situ y mucho más.

Este programa es gratuito y está disponible para las personas con Parkinson, sus familiares, amigos, personas de apoyo y promotores de salud. Entre los presentadores estarán Natalie Diaz, MD, Pacific Neuroscience Institute; Ignacio Mata, PhD, Cleveland Clinic; Xavier Cagigas, PhD, UCLA; y Adriana Jimenez, Give for a Smile. 

El estacionamiento y el almuerzo son gratuitos y hay una zona de actividades para niños disponible. 

Inscribase en persona

Sponsored by:

Medtronic

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

Better Lives, Together: Fresno Parkinson's Summit

9:30 am to 2:00 pm PDT
Free
Fresno Summit 2025

Living with Parkinson’s can be challenging, but many resources are available to help you live your best quality of life. This program will provide important information about defining your care goals – both now and for the future – as well as guidance on accessing supportive services.

The event is free and is open to people with Parkinson's, their family, friends and the community. Registration is required as in-person seating is limited.

Thank you to our event partners, the Greater Fresno Parkinson’s Support Group and Move Up Health.

Speaker: Kwame Adjepong, MD, UCSF

Sponsored by:

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

Let’s Talk About It: Thinking Changes

11:00 am to 2:30 pm EST
FREE
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There are many non-motor challenges associated with Parkinson’s disease that may not always be easy to discuss. With a focus on cognition & thinking changes, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.

Speakers

Mariel B. Deutsch, MD, FAAN
Neurology MIND Care
Cognitive Behavioral Neurologist at Neurology MIND Care PLLC

Kaitlin Stephen, MS, OT/L, LSVT
Metro Physical & Aquatic Therapy

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

The PD Solo Network

Virtual ( Zoom )
1:00 pm to 2:30 pm EST
FREE
PD Solo event banner of woman staring out the window

Parkinson's Foundation Launches: The PD Solo Network - Living Alone While Living with PD

There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET

What is the PD Solo Network: 

A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.

The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.

Upcoming Meeting Dates:

– June 11 and June 25, 2024
– July 9 and July 23, 2024
– August 13 and August 27, 2024
– September 10 and September 24, 2024
– October 8 and October 22, 2024
– November 12 and November 26, 2024
– December 10, 2024

There is no charge to attend, but registration is required in order to receive the Zoom link.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
Educational Events

The PD Solo Network

Virtual ( Zoom )
1:00 pm to 2:30 pm EST
FREE
PD Solo event banner of woman staring out the window

Parkinson's Foundation Launches: The PD Solo Network - Living Alone While Living with PD

There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET

What is the PD Solo Network: 

A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.

The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.

Upcoming Meeting Dates:

– June 11 and June 25, 2024
– July 9 and July 23, 2024
– August 13 and August 27, 2024
– September 10 and September 24, 2024
– October 8 and October 22, 2024
– November 12 and November 26, 2024
– December 10, 2024

There is no charge to attend, but registration is required in order to receive the Zoom link.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Traveling with Parkinson's

In this webinar, we’ll share practical tips to help make travel easier—from packing medications and navigating airports to adjusting to new time zones and finding accessible accommodations.

Virtual
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