Parkinson News You Can Use

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

Rochester Parkinson Network Introduces its
Respite Care Grant Program

PDF
This program will provide respite care in the form of paid companion care to eligible care partners of people with Parkinson Disease. 

Grant applicants can fill out the application form and submit by email to rpnrespitegrant@gmail.com

or mail to:
Rochester Parkinson Network
PO Box 18606
Rochester, NY 14618
 
Please note that Acrobat forms may not work on mobile devices because many default PDF viewers on mobile devices don't have the necessary form filling and submission capabilities. Additionally, some web browsers' built-in PDF viewers may also lack the ability to properly handle form fields.

Download "RESPITE CARE GRANT Application_05012025.pdf"

Learn more about Research and participate!

Research helps to develop new treatments for and improve the care of people with Parkinson’s disease.
Success is only possible with the participation of people with Parkinson’s disease and their care partners.
There are many ways to get involved!

Resources

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Click on the links below:
Ways to be Involved
Real Talk from Participants
Join a Study
Pf logo
Click on the links below:
Advancing Research
Research Advocates
Getting Involved
Join a Study
Local Opportunities
PPMI
PD GENEration
TOPAZ
Volunteer Research Registries
Project: Brain
URMC
Research Study Listings
ClinicalTrials.gov
Fox Trial Finder
URMC
Parkinson Study Group

Opportunites

*Care Partners Wanted*
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Urmc caregiver study

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. 

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Learn More

Transforming Parkinson’s Care for Underserved Communities

Released April 16, 2025
Learn More

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

Introducing...Rochester Women vs Parkinson's

Rochester Women vs. Parkinson’s - a group of women all diagnosed with PD - have joined together to address the fastest growing neurological disorder in the world.  We volunteer our time to educate the community about Parkinson’s, the toll the disease takes and the essential steps that will help to prevent the disease.

Our mission is to advocate for policies and practices that prevent Parkinson’s and to improve the treatment and quality of life for those living with the disease.

What Can You Do?

--Contact your senators and members of Congress.  Ask them to support increased research and regulation of environmental poisons.  Advocate for funds to clean up state and federal superfund sites.
--Contact local officials and ask them to desist in using toxic pesticides in public parks and by sidewalks.
--Encourage the public to stop using toxic chemicals on their lawns. 
--Support sustainable methods of farming such as crop rotation and integrated pest management.  Purchase organic foods.

Want to do more?
Join Us
New 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

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!
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.
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!

 

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

Your Checklist for Parkinson's Travel

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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"

HOME SAFETY SELF ASSESSMENT TOOL (HSSAT) v.3

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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. An online version of this tool is available for download at www.agingresearch.buffalo.edu.
6/19/2024

Download "hssat_v3.pdf"