Rochester Parkinson Network

 Join us at the RPN 2026 PD Reseach Forum

Saturday, April 25 at the JCC, 1200 Edgewood Avenue; FREE to attend!
Learn More

Parkinson News You Can Use

A roundup of headlines, handy tools, and inspirational stories...

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Connecting Through Pickleball: A Parkinson's Community Program

 - ...is an exciting opportunity to play pickleball and contribute to research on the impact of pickleball programming on people living with and caring for people Parkinson's and related disorders.  
 
There is one more 6-week beginner pickleball class  - April 8, 15, 22, 29, May 6, May 13 - for people living with or caring for people with Parkinson's Disease. 
 
The class is perfect for beginners -- and also for those who have played before and want to brush up on their skills. 
 
This program is a collaboration between the Parkinson's Foundation Center of Excellence at the University of Rochester Medical Center, Rochester Accessible Adventures, and community members living with Parkinson's, with generous support from the Parkinson's Foundation. 

Free!  Registration is required.
Program Details & Registration

Upcoming Opportunities in our Community

Click on the image to expand details.
Contact the respective host organization for additional details about their events.
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Tai Chi for Parkinson's

On Monday, March 2, the short film “A passi lenti – quando il Parkinson incontra il Taiji” (Slow Steps – When Parkinson’s Meets Tai Chi) had its first official screening at Cinema Massimo in Turin, welcomed by a large, enthusiastic audience.

Produced in 2025 as part of the “Tai Chi for Parki, Tai Chi for Health!” project, the film was promoted by AIGP in collaboration with Taiji-to (Chen Bing Taiji Academy Italy) and made possible thanks to the support of the Waldensian Church.

This screening marks only the beginning of the journey. The project now aims to bring the short film to new cultural, health, and social spaces—raising awareness of the Tai Chi x Parki initiative and creating more opportunities for connection, practice, and shared understanding.
Learn More

My Parent Has PD: Am I At Risk & What Can I Do?
Proactive Brain Health

Meet Maliah Grant, daughter of retired NBA player Brian Grant who was diagnosed with young-onset Parkinson’s at age 36. She and Ray Dorsey, MD, co-author of The Parkinson's Plan, will break down Parkinson's genetic risk factors, what the research suggests reduces risk, and actionable steps to take as preventative measures - with special consideration for the perspective of someone whose parent has Parkinson's.

Ray Dorsey, MD, MBA is a practicing neurologist at Atria Health and Research Institute and director of the Center for the Brain & the Environment, a nonprofit research initiative that will investigate the environmental causes of brain diseases, including Parkinson’s, Alzheimer’s, and more. He received his MD and MBA at the University of Pennsylvania School of Medicine. 

About Proactive Brain Health: This livestream is part of a series on brain health through the Proactive Brain Health Alliance - a community dedicated to educating those who are concerned about reducing risk, are at risk, or living in the preclinical or prodromal stages of neurodegenerative diseases.

Special thanks to our partner CND Life Sciences. For additional information, visit https://briangrant.org/live-well/ and https://www.proactivebrainhealth.org

Parkinson & Movement Disorder Alliance (“PMD Alliance” for short) is an independent, national nonprofit dedicated to providing opportunities for people impacted by movement disorders to learn, live fully, and spark meaningful connections around them.  PMD Alliance recorded content is made available for informational, educational, and community-building purposes only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the guidance of your doctor or healthcare team with questions or concerns that may arise from what you learn from our speakers. Speakers are responsible for their own content and their appearance on our channel does not mean PMD Alliance endorses all speaker statements.

Recent Headlines

Living your best life with Parkinson's starts here...
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Visiting NYC in 2026?

Opening in 2026, The Bandeen Center is the first-of-its-kind fitness and wellness facility especially for the Parkinson’s community in New York City. With state-of-the-art studios for signature fitness classes designed to improve mobility and slow progression for people with PD, the Center also includes a cafe for meet-ups and support groups, varied programs for voice, music, and art, as well as lectures and events. Here, members can be empowered to live their fullest lives with Parkinson’s—in a community that supports them every step of the way.

Learn More
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Culture


Americans are unprepared for the expensive and complex process of aging – a geriatrician explains how they can start planning


Published: November 18, 2025 8:14am EST
Learn More
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Participate in  Research

The SingWell Project, a research initiative out of Toronto Metropolitan University is studying the benefits of music for those with chronic conditions, including Parkinson's, to understand the role that music plays in their quality of life –– whether that’s a big role, a small one, or none at all.

This survey asks about how people engage with music, even those who don’t engage much!
 

  • To participate, you must be diagnosed with Parkinson’s.

  • All types of Parkinson’s and levels of severity are welcome.

  • No music experience necessary

Take the Survey

In other news...

Living your best life with Parkinson's continues here...
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Brain Health & Hobbies

Imagination and ingenuity may play a similar role as a healthy diet or exercise.

Learn More

The Clean Fifteen™ and Dirty Dozen™ lists

EWG wants to empower you with knowledge about pesticide residues on produce so you can make the best shopping choices for your family.
Learn More

You are what you eat...

Parkinson's Link to Gut Bacteria Suggests Unexpectedly Simple Treatment

Learn More
Stay tuned...

RPN's biennial Research Forum will take place April 2026!

We want to hear which studies, gadgets and treatments interest YOU...click below and tell us.
Contact RPN
Parkinson’s manifests in an infinite combination of symptoms.
"Think of PD symptoms as a salad bar. One person has spinach, onions, feta cheese, nuts and Greek dressing on their plate. Another has lettuce, peppers, radishes, cheddar cheese, ham, croutons, and Italian dressing on theirs. While incredibly different, both plates contain the same thing: a salad."
- David Riley, Co-founder, InMotion,
  Cleveland, OH, and creator of the PD
  ‘salad bar’ analogy
PD Symptom Map

3 Ways to Take Control of Your Health

 

Think Physical

How To Choose a Medicare Plan
Presented by Lifespan
Runs 1 ½ hours with Q&A after
 
Nov 20th 9:30 at Lifespan
Dec 2nd 1:00 at Lifespan

Register at www.lifespan-roch.org or call 585-743-1283.
Learn More

Maintain a Social Circle

Parkinson’s Media Mastery Workshop – Level 1
This workshop is designed to empower individuals affected by Parkinson’s disease and other neurodegenerative conditions to effectively harness the power of media for advocacy and awareness by sharing their story.

Workshop Details:
Dates: Check pdavengers.com
Time: Each session is 90 minutes
Format: Virtual sessions conducted online
Learn More

Give Yourself Permission

Neurology Supportive & Palliative Care Service
Our mission is to improve the quality and availability of palliative care for all people in our community affected by neurologic illness and those that care about them through partnering with them in clinical care, education, community outreach, advocacy and research.

Click below to view the July presentation by Dr. Sue Ouellette.
View Presentation
One person's story:Processing progression with Parkinson’s disease

One person's story:
Processing progression with Parkinson’s disease

Lori DePorter, who lives in Pennsylvania, was diagnosed with young-onset Parkinson’s disease at age 45. She shares about the judgment-free outlet that’s helped her navigate the emotional weight of Parkinson’s progression.
See Mental Health Care (under Support & Services)

Technology Tools

Gadgets, gear and gifts to live the best life with PD
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ParkiBot.com
ParkiBot is a conversational-AI for the Parkinson's Disease community. It's not a medical professional, more like a librarian who reads a lot, so ... what would you like to know?
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SteadyScrib.com
The first writing tool specifically designed for people with Parkinson’s

Parkinson’s UK Tech Guide

Learn about devices and apps that could improve your quality of life.
Make more-confident decisions about using technology to manage your health and lifestyle.
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Tips for Daily Living
20 Parkinson’s-Friendly Gifts
Parkinson’s Psychosis: What it is and why it happens

OBJECTIVES:  Raise awareness about Parkinson’s psychosis, promote a better understanding of the condition, and empower affected individuals and their families to recognize the symptoms and openly discuss them with healthcare professionals, friends, and family.

 

Last updated Sept. 16, 2024, by Lindsey Shapiro, PhD

Read the article here

Your Checklist for Parkinson's Travel

PDF
As the busy summer season approaches, learn how to travel with greater ease with Parkinson's disease with the help of this tool prepared and provided by the Davis
Phinney Foundation.
6/19/24

Download "Travel-Checklist-DIGITAL-1.pdf"

HealthWell Foundation Launches Fund to Assist People Living with Parkinson’s Disease

04.22.2025
 
Copayment or Insurance Premium Assistance Available to Medicare Beneficiaries

GERMANTOWN, Md. — April 22, 2025 — The HealthWell Foundation®, an independent non-profit charitable organization that provides financial assistance for underinsured Americans has opened a new fund to assist individuals living with Parkinson’s disease (PD). Through the fund, HealthWell will provide up to $4,000 in medication copayment or Medicare Part B premium assistance to Medicare patients for prescription drugs and biologics for the treatment of Parkinson’s disease. Eligible patients must have household incomes up to 500 percent of the federal poverty level. 
Parkinson’s disease is a neurogenerative disease that causes progressive loss of motor control (tremor, trouble moving or walking) or non-motor symptoms (anxiety, depression, dementia). Symptoms develop slowly and the progression of symptoms can be different from person to person due to the diversity of the disease. PD is the 14th leading cause of death in the United States and the second-most common disease after Alzheimer’s. An estimated one million Americans are living with PD and nearly 90,000 new cases are diagnosed each year. There is no cure for Parkinson’s disease. 
“Treatment and management of Parkinson’s disease is expensive, oftentimes much more than a person on Medicare can afford. Yet, the inability to stay on a treatment regimen because of cost is not a viable option for someone living with PD,” commented John L. Lehr, President and CEO of the Parkinson’s Foundation. “Missing even a single dose of medication can be temporarily debilitating and can drastically impact a person’s quality of life. We commend the HealthWell Foundation for understanding the financial challenges PD patients encounter in managing their condition and the importance of adhering to a proper treatment regimen.” 

Michael S. Heimall, President & CEO, HealthWell Foundation, commented on the fund, “Previously, we were able to offer financial assistance to Medicare patients living with PD through our Movement Disorders Fund. We are excited to launch this dedicated fund to ensure that those living with PD have access to life-changing treatments and medications that enable them to maintain a better quality of life. Medications for the treatment and management of the disease are costly and beyond reach for many, especially for those on Medicare. We applaud our donors for recognizing the challenges people living with PD face and are proud to be able to provide the financial resources they need to adhere to treatment without the worry and anxiety of how to pay for it.”
To determine eligibility and apply for assistance, visit HealthWell’s Parkinson’s Disease – Medicare Access Fund page. Note that all new fund openings and fund re-openings occur at 11:00 a.m. Eastern Daylight Time (8:00 a.m. Pacific) Monday through Friday. To learn more about HealthWell programs and our robust disease fund portfolio, visit our website at HealthWellFoundation.org.

About Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience, and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $474 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, X, Instagram or call 1-800-4PD-INFO (1-800-473-4636).

About the HealthWell Foundation
A nationally recognized, independent non-profit organization founded in 2003 and a resource to the White House Cancer Moonshot Initiative, the HealthWell Foundation has served as a safety net across over 90 disease areas for more than 1.1 million underinsured patients. Since its inception, HealthWell has provided over $4.8 billion in financial support through more than 1.8 million grants to access life-changing medical treatments patients otherwise would not be able to afford. HealthWell provides financial assistance to adults and children facing medical hardship resulting from gaps in their insurance that cause out-of-pocket medical expenses to escalate rapidly; HealthWell assists with the treatment-related cost-sharing obligations of these patients. HealthWell ranked 24th on the 2024 Forbes list of America’s Top 100 Charities and was recognized for its 100 percent fundraising efficiency. For more information, visit HealthWellFoundation.org.
Learn More

How Will We Pay for Care: Financial Considerations
(Advance cursor to 4 minutes, 20 seconds to begin viewing the recording.)

The financial costs of long-term care and long-term caregiving are enormous. Explore some of your options for this important aspect of caregiving.

Presenter:  Arvette M. Reid, Client Services Director, SEIA

This virtual presentation was originally prepared for Insight Memory Care Center (IMCC) on August 28, 2024.  IMCC is located in Fairfax, Virginia and serves the DC metro area. Their caregiving resources are used across the country.

Ms. Reid covers scarcity of caregiving resources, continuing care retirement communities (CCRCs) and deals specifically with the case of couples wishing to stay together.
Tell us what you think!

HOME SAFETY SELF ASSESSMENT TOOL (HSSAT) v.3

PDF
Falls are the leading cause of injury, disability, nursing home placement, and death in adults over the age of 65 years. Yet in the United States one in every three older adults falls each year.

In order to address this problem, the Occupational Therapy Geriatric Group at the University at Buffalo
created the Home Safety Self Assessment Tool, as a part of combined effort with the Community
Health Foundation of Western and Central New York to disseminate information regarding how to
prevent falls in Erie County, NY.

Use of this tool as instructed in this book helps to prevent future falls.
6/19/2024

Download "hssat_v3.pdf"

Let's Talk About Living With Parkinson's...


With Friends and Adult Family

My degeneration cover
My Degeneration
A Journey Through Parkinson's
Peter Dunlap-Shohl
 
How does one deal with a diagnosis of Parkinson’s disease at the age of forty-three? My Degeneration, by former Anchorage Daily News staff cartoonist Peter Dunlap-Shohl, answers the question with humor and passion, recounting the author’s attempt to come to grips with the “malicious whimsy” of this chronic, progressive, and disabling disease.

This graphic novel tracks Dunlap-Shohl’s journey through depression, the worsening symptoms of the disease, the juggling of medications and their side effects, the impact on relations with family and community, and the raft of mental and physical changes wrought by the malady.
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The PD Movers We Keep Moving

THE PD MOVERS – WE KEEP MOVING storybook is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease. The goal of the storybook is to inspire and connect individuals in the community by sharing the experiences of these remarkable individuals. We also hope these stories will educate others by removing the mysteries and misconceptions of Parkinson’s disease and provide useful resources regarding diagnosis and treatment to allow others to thrive with Parkinson’s disease.

Learn more about the American Parkinson Disease Association (APDA) here.

With Children
Ill hold your hand if you fall
I'll Hold Your Hand So You Won't Fall
Rasheda Ali
 
Sometimes Parkinson's disease is difficult for adults to deal with, so you can imagine how much more perplexing it must be for children. In this beautiful book, adults will have an opportunity to read and discuss with children the most common symptoms of Parkinson's in a safe and creative environment that utilizes words, illustrations and medical facts about the disease.
Grandpa used to drive
Grandpa Used to Drive Big Trucks
Dr. Martha Nance & Steve Witebsky
 
In this chronic illness book for kids, readers learn that love is more powerful than any disease . . . and that grandparents living with Parkinson's disease are still our loving heroes.

The message at the core of the story makes it a perfect read for any child experiencing grief and loss—thoughtfully navigating how to mourn what has changed while showing young readers that even though they are just a kid, they can truly help!

 
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Pop with Parkinson's
Arianna Spurlin & Victoria Lin
Meet Sammy! She's 10 years old and in the fifth grade. She loves her family more than anything. That's why it's so important for her to tell her Pop's story.

Parkinson's Disease impacts people all over the globe. Learn with Sammy about the importance of acceptance and education.

How do I know if the Parkinson's educational resources I use are trustworthy?

This video was created and made available through Inova Parkinson's and Movement Disorders Center (IPMDC).

Inova is Northern Virginia’s leading nonprofit healthcare provider.  Inova has within it a Parkinson's and Movement Disorders Center (IPMDC) that not only sees patients but also provides other resources, tools and support.

To sign up for Inova's  Living Well with Parkinson's | IPMDC News, click here.
Learn More
Recording Available: "Rebranding" Parkinson's
NoSilverBullet4PD hosted Dr. Laurie Mischley, who is probably the world's leading Parkinson's naturopath.

Despite 200+ years of effort, we do not yet have a system to prevent, halt, or reverse Parkinson’s. Dr Mischley explores the notion that the problem lies in the lens through which we’ve been viewing it, the approaches we’ve been taking, and the assumptions we’ve been making.


This presentation followed by Q&A was recorded on November 11, 2024.

Courtesy of NoSilverBullet4PD.com
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