My PD Story

Kayla Giese at Parkinson's Revolution
Family Members

Kayla Giese

In 2021, I received a weekly newsletter email from the local spin studio I’m a regular at in Sacramento, CA. The email was promoting the first Parkinson’s Revolution that would be held in just a few months. My grandfather (who we call “Papa”) was diagnosed with Parkinson’s disease (PD) about 10 years prior. I immediately clicked the link to sign up because I had to support this cause that I had a close connection with.

Once I signed up and learned that I could also fundraise for the event, I thought “hey, why not?!” and I started bugging family and friends to donate. Ride day arrived and I was eager to participate and maybe connect with other people who were indirectly affected by Parkinson’s in the way that I was. As I approached the check-in table, I was greeted with welcoming smiles from the lead volunteer and Parkinson’s Foundation staff who hyped me up for being the top fundraiser! I was so excited. Once the event was over, Foundation staff asked if I would be interested in volunteering and almost four years later… I’m still here!

Kayla Giese and her papa

My Papa is a retired fire captain, was an avid golfer, enjoyed running marathons and could build just about anything before his battle with PD. He is the strongest and most humble man I know. When he was diagnosed with PD, I didn’t understand what was ahead of us as a family. I never really knew what Parkinson’s was. Through his battle with the disease, we’ve watched him lose his ability to do the things he loves.

Volunteering for the Parkinson’s Foundation has not only been rewarding, but also humbling and cathartic for me. During my time as a volunteer, I have been so lucky to meet other amazing volunteers who do not let their diagnosis get in their way from achieving anything and everything they want. I’ve met other family members of people with Parkinson’s who understand the heartbreak of watching your loved ones lose the ability to do the things they love as they age in their battle.

The connections I have made through the Parkinson’s Foundation have taught me what perseverance, strength and support really mean. I am so grateful to my fellow committee members, event participants and Foundation staff for being the community I never knew I needed.

The resources the Parkinson’s Foundation provides are just as important to caregivers and family members as they are to those living with the disease. My Papa is a pillar in my support system and saved so many lives in his career, and so my volunteer work through the Foundation is the best way I can honor him.

The Parkinson’s Foundation has created a community that is unmatched, and I am so thankful to be a part of it and to keep fighting for those who can’t always fight for themselves.

Sign up for a Parkinson’s Revolution event near you and explore Parkinson’s Foundation volunteer opportunities.

Educational Events

Understanding Parkinson’s: Live Well Today

Virtual ( Zoom )
9:30 am to 2:30 pm EST
FREE
REGISTER FOR VIRTUAL

IN-PERSON REGISTRATION IS AT CAPACITY

If you would like to be placed on the in-person waitlist please email Derek at drussell@parkinson.org.

If you would like to participate virtually, please click the orange "Register for Virtual" button above.

Understanding Parkinson’s: Live Well Today

Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life.  This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.

Speakers

Sarah A Dodwell, MD
MaineHealth

Michael S Kleinman, DO
MaineHealth

Michele Delisle
Occupational Therapist, Back In Motion Physical Therapy

Aimee Reilly, LCSW
Behavioral Health Clinician III at MMP Neurology

Roople Unia, MD
MaineHealth

Anne W Herrick, ANPBC
MaineHealth

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.

Lunch will be provided for in-person registrants. In-person registration is at capacity.

A Collaboration with MaineHealth

Maine Health

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Educational Events

Managing Changing Symptoms - Edmond, Oklahoma

10:00 am to 1:00 pm CDT
FREE
Managing Changing Symptoms Banner

Check-in and resource tables start at 9:00 a.m.
Breakfast will be provided.

After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them. 

Expert Speaker:

John Wedlake, MD
Neurologist 
Stillwater Neurology 

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

Attend in-person

Parking: Parking is complimentary for attendees of the program. 

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

The Parkinson’s Foundation South Central Chapter is grateful for the unwavering support of our Chapter Partners and Sponsors. Learn more about them by visiting our Chapter Supporter webpage. 

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Educational Events

Mind, Mood, and Motion

12:00 pm to 4:00 pm EST
FREE
Mind Mood Motion Banner

In-person check-in starts at 12 p.m.

Exercise is an essential part of overall Parkinson’s management. In addition to helping with movement symptoms, exercise can have a positive impact on non-motor symptoms in Parkinson’s. This program focuses on how exercise supports brain health and can lead to improved emotional and cognitive well-being.

Lunch will be served.

Speakers

Dr. Ann Murray, MD
West Virginia University

Emily J. Taylor, PTA, BS, MS
Mid-Ohio Valley Parkinson’s Support Group, Leader
ROCK STEADY BOXING, Head Coach 

Matthew Burton, MD
Marshall Health

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

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Raise Awareness

How to Communicate Your 5 Parkinson’s Care Needs During a Hospital Visit

Daughter sitting with her father during a hospital visit with the doctor

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital.

Hospital staff may not be familiar enough with PD to understand symptoms or realize they can worsen if you do not receive Parkinson’s medications on time. Careful preparation and clear communication can help minimize complications and recovery time.

People with Parkinson’s and their care partner can use the Five Parkinson’s Care Needs from our Hospital Safety Guide, listed below, to communicate PD needs during a hospital visit, whether planned or unplanned.

1.  I need my hospital chart to include my exact medications and match my at-home schedule.

Why it’s important: Hospitals often follow standardized medication schedules to ensure timely administration for most patients, but this doesn’t prioritize the complex medication routines that people with Parkinson’s follow.

What to look out for: Make sure the hospital records your exact medication times rather than the number of times per day you take them. Otherwise, the hospital will

follow their schedule instead of yours.

What to ask for: Ask to verbally review your hospital medication list and schedule with the hospital care team, confirming that they ordered medications according to the correct specific times. You can also request a printout to review and compare to your Medication Form.

2.  I need to take my Parkinson’s medications within 15 minutes of my usual schedule.

Why it’s important: Delayed or missed doses can lead to falls, difficulty participating in rehabilitation and being less prepared to go home after leaving the hospital.

What to look out for: Many hospitals allow nurses to give medications up to an hour before or after the scheduled time.

What to ask for: Remind nurses when it is almost time for your medications. Ask nurses to help you take your medications according to your home schedule. Describe your symptoms and how they are affected when you do not receive medication on time, every time.

3.  I need to avoid medications that make my Parkinson’s worse. These medications include those that block dopamine, sedatives and certain pain medications.

Why it’s important: Lack of dopamine in the brain is the primary cause of Parkinson’s movement symptoms. When dopamine-blocking medications are given to someone with Parkinson’s, they can worsen the symptoms they are given to treat and cause harmful side effects.

What to look out for: Your care team may prescribe new medications to treat nausea, confusion and psychosis (hallucinations and delusions) without realizing they can worsen Parkinson’s symptoms.

What to ask for: Share the list of harmful medications on the Parkinson’s Care Summary and ask for a safe alternative.

4.  I need to move my body as safely and regularly as possible, ideally three times a day.

Why it’s important: For people with PD, regular movement — often coupled with physical and occupational therapy — is important for controlling PD symptoms, preventing falls and minimizing complications.

What to look out for: In the hospital, your care team may limit your movement to keep you safe, especially if you are weak after surgery, have low blood pressure or have other issues that put you at risk of falling.

What to ask for: Ask for rehabilitation therapy (physical and occupational therapy) if you need help moving safely. If it is safe, continue daily activities, such as dressing, walking to the bathroom, sitting in a chair for meals and taking short walks

5.  I need to be screened for swallowing changes to safely maintain my medication routine and minimize my risk of aspiration pneumonia and weight loss.

Why it’s important: Difficulty swallowing, called dysphagia, is common for people with Parkinson’s. Minor swallowing issues can worsen and create severe complications during a hospital stay.

What to look out for: Staff may order “NPO” (nothing by mouth) with the goal of preventing severe swallowing-related complications, stopping Parkinson’s medications, along with all other food, liquid, and medications. This can make swallowing issues worse!  

What to ask for: Instead of stopping Parkinson’s medications, you want to avoid medication pauses. Ask the nurse about ways to continue Parkinson’s medications safely.

Viewing the Hospital Safety Guide on a tablet

In addition to providing useful information and tools to help you advocate for your best care, and explain the Five Parkinson’s Care Needs to hospital staff, the Hospital Safety Guide provides:

  • Forms for you to fill out with personal care details and medication schedules.
  • Tips for care partners.
  • Parkinson’s care information to share with the hospital care team.

Order and download the free Hospital Safety Guide right now.

Educational Events

Navigating Advancing Needs

1:00 pm to 4:00 pm MDT
Free
Navigating Advancing Needs

Navigating Parkinson’s disease involves looking ahead, learning and adjusting as symptoms and needs change. This program addresses some of the challenges of advancing PD and explores strategies to prepare for the future, including how to evolve your care plans and treatments throughout progression so you can live your best life with PD now.

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

Speaker:
Antonia Pusso, MD, University of Colorado Anschutz Medical

Sponsored by:

Seed for Success

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Educational Events

Mid-Atlantic Chapter Parkinson's Symposium

Virtual ( Zoom )
12:00 pm to 4:00 pm EST
FREE
REGISTER FOR VIRTUAL

Check-in start at 12 p.m. ET

Join the Parkinson’s Foundation in person or online for the Mid-Atlantic Chapter Parkinson’s Symposium. Hear about ongoing research, current treatments, and resources available to help you live your best life with Parkinson’s.

Speakers

Dr. Fernando Pagan
Medical Director, MedStar Georgetown University Hospital

Dr. Yasar Torres-Yaghi
MedStar Georgetown University Hospital

For in-person attendees: In-person check-in start at  12 p.m. ET. 

For virtual attendees, via Zoom: The live stream starts at 12:30 p.m. ET

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.

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Midwest Chapter Parkinson's Symposium

Virtual ( Zoom )
1:00 pm to 4:00 pm CDT
FREE
REGISTER FOR VIRTUAL

In-person check-in, Lunch and Vendor Visits start at 12 p.m.; Program starts at 1 p.m.

Join the Parkinson’s Foundation, in-person or online, for the Midwest Chapter Parkinson’s Symposium.  Hear about ongoing research, current treatments, and resources available as they relate to Cognition, Mood, and Speech.

Speakers

Aaron C. Malina, PhD, ABPP
Clinical Neuropsychologist
Northwestern Medicine-Lake Forest Hospital

Christine Wancket, MS, CCC-SLP
Speech-Language Pathologist
Neuro Speech Connections, PLLC

For in-person attendees: In-person check-in and vendor visits start at 12 p.m. Lunch will be served during this time.

For virtual attendees, via Zoom: The live stream starts at 1 p.m.

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.

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Educational Events

Let’s Talk About It: Pain in Parkinson’s

11:00 am to 1:00 pm EST
FREE
Let's Talk About It Banner

Hosted by the Parkinson’s Foundation Georgia Chapter & the Athens Community Council on Aging

There are many non-motor challenges associated with Parkinson's disease that may not always be easy to discuss. With a focus on pain, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.

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

Featured Speaker

Steve Crider Jr., MD
Origins Spine and Joint Physicians

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

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Fundraising Events

2026 runDisney Springtime Surprise Weekend

8:00 am to 8:00 pm EST
A family smiling at the camera after a Champion's event by the ocean.

The Parkinson's Foundation is an official charity partner for the 2026 runDisney Springtime Surprise Weekend. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org. 

Fundraising Commitments:

  • VIP - $5,000
  • Challenge (5k, 10k, & 10m) - $2,250
  • 10m - $1,000
  • 5k/10k - $750
  • Honorary Champion - $500

runDisney Springtime Surprise Weekend promises to be an epic experience! Come lace up and become the hero of your own story as you conquer magical miles throughout Walt Disney World® Resort, April 3–6. Choose from an adventurous 5K, 10K or 10-Miler, or participate in a Challenge that combines all three races for a total of 19.3 miles. But no matter which you choose, you’ll be immersed in everything from meet-and-greets with rarely seen Characters to inspiring movie clips and more. There’s even a morning yoga session to kick off the weekend stretch and prepare you for the journey. Best of all? Upon completing your quest, you’ll earn a one-of-a-kind themed medal for each race you run. Complete all three races and take home a fourth Challenge medal!

Looking for travel support? Sign up for a free consultation with our wonderful friends at Magical Park Vacations at THIS LINK (whether you end up running with us or not). They have deep knowledge of the parks and traveling with a family member who has Parkinson’s disease.

NOTE: Registration for this race includes access to the Walt Disney World Resort® amusement parks for the race event only. To “ride-the-rides” you would need to purchase a separate ticket to the parks. There may be the opportunity for friends and family to come cheer you on without needing to purchase entry to the park, but this will be announced later by the runDisney organization at their discretion.

Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.

If you have questions, send us an email at Run4PD@Parkinson.org. For more information about the race itself, visit the runDisney Homepage.
 

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