Podcasts

Episode 168: Celebrating Our Parkinson’s Foundation Volunteers

This month, we are honoring and celebrating our Parkinson’s Foundation volunteers. Every volunteer helps make a difference in the everyday lives of people living with Parkinson’s disease, whether it’s by helping organize a local community walk, serving as a research advocate providing feedback and collaborating with scientists on research studies, or speaking at a panel for a community education program. There are many opportunities to get involved with the Foundation. 

In this episode, we highlight two volunteers, Tonia Smith, a public service advocate, member of the Parkinson’s Foundation People with Parkinson’s Advisory Council, and caregiver to her mother living with Parkinson’s disease, and Steve Sain, a retired engineer and a person living with Parkinson’s. They share their stories about how they became involved with the Parkinson’s Foundation. 

Released: April 2, 2024

Videos & Webinars

Expert Briefing: Understanding Pain in Parkinson's

March 13, 2024

If you live with Parkinson’s disease (PD) and experience pain, you are not alone.  Pain is a common non-motor symptom of Parkinson’s disease, that is often under-recognized.  Learn about the types of pain in Parkinson’s, its impact on the individual, and the many ways to manage pain in PD. 

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Presenter

Apurva Zawar, PT, DPT, Board Certified Geriatric Clinical Specialist
Volunteer Assistant Clinical Professor at University of California, San Francisco
Founder of Beyond Rehab (digital neuro rehab and wellness clinic)

Educational Events

Safe Movement in the Hospital

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday

Staying active in the hospital is key to a faster recovery. Regular movement has many benefits, including reducing muscle loss, helping with sleep, improving focus and managing constipation. For people with PD in the hospital, regular movement is important for managing symptoms, preventing falls and minimizing complications.

Speakers

Karen Bitzer, OTR/L, MBA
Director
Care Transitions and IP Rehab- Academic

Julia Skarbinski, MBA, BSN, RN
Chief Nursing Officer
UH Portage/South Market

There is no charge to attend, but registration is required.

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

Parkinson's 101: What You and Your Family Should Know

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday

This program offers an introduction and basic overview of Parkinson’s disease (PD). PD varies from person to person and changes over time. Discover its causes, common symptoms and available treatments. Learn practical daily living tips to empower you to take charge of your health and to navigate the challenges of living with PD.

Speaker

Christopher Tolleson, MD, MPH
Clinical Associate Professor of Medicine
Division of Neurology Director of University of Tennessee Medical Center's Cole Center for Parkinson's and Movement Disorders
Director of University of Tennessee Medical Center's Huntington's Center of Excellence

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.

We want to thank this webinar's sponsor, Biogen's Luma Study, for supporting our mission.

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

Exploring Next Steps in Care

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday

Care needs in Parkinson’s change as symptoms progress.  This program will provide you with tools to help you decide when it’s time to ask for outside help.  Learn what you need to know to find the right kind of caregiver to meet your needs and discuss next steps to consider for care as Parkinson’s advances. 

Speaker

Joan Miravite, DNP, RN, FNP-BC, FAAN, FAANP
Assistant Professor, Icahn School of Medicine at Mount Sinai
Director of Interdisciplinary Clinical Care for Movement Disorders
Mount Sinai Beth Israel, Department of Neurology
Strauss Movement Disorder Center
Parkinson Foundation Center of Excellence

There is no charge to attend, but registration is required.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day Logo

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

The Role of Music Therapy in Managing Parkinson's

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday: Social Engagement Series

Join us for an insightful webinar exploring the transformative power of music therapy in improving mental health for individuals living with Parkinson's disease. This session will delve into music therapy, showcasing how rhythmic auditory stimulation, melody, and harmony can enhance emotional well-being, cognitive function, and motor skills.

Speaker

Nina Guerrero, PhD, MT-BC
Clinical Director and Grant Manager
Sounding Joy Music Therapy, Inc.
www.soundingjoymt.org

There is no charge to attend, but registration is required.

Due to the nature of our social engagement programs and to protect the privacy of participants, we will not be recording or archiving these programs. By not recording, it's our hope that the program provides a comfortable environment that encourages meaningful participation.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day Logo

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

Exploring Financial and Estate Planning

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday

Financial and estate planning can seem overwhelming and many just don’t understand what it is and why it’s important. Understand what estate planning is, what’s involved, and how to begin the process of protecting your assets to ensure you and your loved ones are cared for. Don’t leave your future to chance and gain the knowledge to make informed decisions.

Speaker

Colleen Ceh Becvar, Gerontologist, Owner, Certified Care Manager
Trinity Advocacy Group, LLC
Midwest Chapter of Aging Life Care Association Board of Directors

There is no charge to attend, but registration is required.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day Logo

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

Recognize & Respond to Parkinson's Psychosis

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
Free
Husband and wife lookin at a tablet while on their porch

Wellness Wednesday

Not everyone with Parkinson’s will experience psychosis, but it can be frightening if you don’t know what’s happening or how to handle it.  It is important to be able to recognize these symptoms if they occur.  Learn what to watch for and know how to respond to these behavior changes to ensure the safety and well-being of you and your loved one.

Speakers

Heshan J. Fernado, PhD, ABPP-CN
Board Certified in Clinical Neuropsychology
Corewell Health, A Parkinson's Foundation Comprehensive Care Center

Ruth Maidens
Health Promotion Facilitator, Parkinson & Movement Disorders Program
Kaye Edmonton Clinic, Alberta Health Services, A Parkinson's Foundation Center of Excellence
 

There is no charge to attend, but registration is required.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day Logo

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

Upcoming Events

My PD Story

Rebecca LeClair on stage at Moving Day Walk
Family Members

Rebecca LeClair

I unabashedly tell people that I am a selfish volunteer. Everything I do is to help my brother, Greg. 

Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.

My volunteer history with the Parkinson’s Foundation started more than a decade ago — soon after my brother was diagnosed. He hadn’t even turned 50 and was already displaying a range of symptoms. Each successive symptom seemed nastier than the previous. I was scared for him and for the rest of my family.

While I was researching everything I could about the disease out of fear that I could also “get” Parkinson’s, I jumped into the Foundation’s local chapter with both feet on the ground and arms in the air. I learned so much at the Annual Symposium that I demanded every family member of mine attend the next year and we’ve gone every year since!

At the time of Greg’s diagnosis, I worked as a local news reporter. I decided I would produce as many stories as I could about PD. I interviewed neurologists and shot footage of my brother’s symptoms to show what Parkinson’s can do to a human. Greg did not mind being my “example” and he shared the personal side of the disease, beyond the tremors. He talked about his frustration, the isolation, the hopefulness and the hopelessness. I learned so much! Through my videos and published stories, we helped generate awareness of the disease and more importantly, shared information about all the support services available to people with Parkinson’s in my area.

I joined the local board and now sit on the Parkinson’s Foundation New York & New Jersey Chapter board.  Being a board member gives me direct access to those on the front lines in this battle. I like knowing what’s being accomplished all around the country. I pay attention to all the research projects and funnel the information to my brother so he can discuss them with his doctors. (I told you I was selfish — Greg comes first). 

Recently, one of my high school friends, Cindy, was diagnosed with PD. I forward information to her, too.  I also send it to my family members. The more they know about this disease, the more we can do to help Greg, Cindy, and everyone living with PD.

I have been on the Moving Day committee for close to 10 years. First, as the event emcee and now as a full-blown committee member. I run the Facebook account for the Moving Day group. I share information with local media organizations and set up interviews for Foundation officials and other people with PD to appear on local television. These are tasks I am more than capable of doing and I’m happy to share my skills. We all have some skill to offer.

Approximately 90,000 people will be diagnosed with Parkinson’s in the U.S. this year. All those people and their families will need help understanding how this disease will impact them (explore Parkinson’s Foundation resources here). We need more people to be selfish and get involved. Whether you get involved for yourself, a family member, or a friend, your selfishness might actually be the most positive character flaw you have!

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

Fundraising Events

Community Walk Arroyo Grande

10:00 am to 1:00 pm PDT
FREE
Group of people going through the finish line at a Moving Day Walk

Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.

The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.

Learn more about bringing an event to your area

Upcoming Events

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