Greater Rochester NY Area
Parkinson Support Groups

Eastside Parkinson Support Group
When: Second Wednesday of each month, 1-2:30PM
Where: United Methodist Church 169 E. Main St., Webster
Contact: chazimm@gmail.com or choefen5@gmail.com
We are a small group that allows everyone to have a chance to share and ask questions. Spouses are welcome and often join us. All are welcome.

PD Support Group
When: First Thursday of each month, 4-5:30PM
Where: Al Sigl Center, 1000 Elmwood Ave, Rochester
Contact: Mary Berk, mberk@lifespan-roch.org, 585-281-9652
(Leave a message to receive a call back.)

Parkinson Support Group of the Finger Lakes
When: Last Wednesday of each month, 1PM
Where: Wood Library, 134 North Main St., Canandaigua
Contact: psgfl2002@gmail.com
Topical presentations, followed by separate discussion groups for People with Parkinson's (PWP) and Care Partners.

Rochester Regional Health PD Education & Support Group
When: Third Wednesday of each month, 1PM
Where: 2655 Ridgeway Avenue, Suite 140, Rochester
Contact: 585-368-6679 sarah.wolf2@rochesterregional.org
Hybrid format (in person and zoom), with topical presentations followed by open group discussion.
All are welcome.

Wellness 360 Caregivers Support Group
When: Last Tuesday of each month, 4-5PM
Where: Webster Rec Center, 1350 Chiyoda Drive, Webster
Contact: phillipsjeanne74@gmail.com or beth@wellness360fitness.com
This is a supportive and uplifting group devoted to caregivers for people with varied diagnoses. If needed, there is supervised fun for your loved one while you meet in a nearby room with others who understand what you are going through.

Westside Support Group
When: Second Tuesday of each month, 1-2:30PM
Where: Chili Community Center, 3237 Chili Ave, Rochester
Contact: Mike Shafer 585-330-1606
All are welcome!

Women with PD Support Group
When: Fourth Monday of each month, 12:30-2PM
Where: Al Sigl Center, 1000 Elmwood Ave, Rochester
Contact: Yvonne Hylton, byvonnes@earthlink.net
Hybrid format (in person and Zoom). Women with PD gather to share experiences and support one another.
Please note that holidays might impact the schedule.

Young at Heart Support Group
When: First Monday of each month, 4-5:30PM
April-October ~in person~
November-March ~virtual only~
Where: Al Sigl Center, 1000 Elmwood Ave, Rochester
Contact: Yvonne Hylton, byvonnes@earthlink.net
This group caters to people of all ages with a connection to PD. Please note that holidays might impact the schedule.

Young Onset Parkinson Network
Education, insights, blog, virtual monthly meetings, world class speakers for people diagnosed at a young age no matter their current age. yopnetwork.org

Recently Diagnosed with Parkinson's Disease?

PDF

Group Objectives

To help participants:

Feel less isolated and more connected.
Create a personal care plan.
Learn stress reduction strategies.
Learn about and practice healthy coping skills.
Improve communication skills and self-advocacy.

Julie Bartlett is a licensed mental health counselor with over 35 years of experience providing individual counseling, group counseling and consultation. For more information on this free service, contact her at 585.615.6844 or jcbartlett28@gmail.com.

Also visit:
Recently Diagnosed | Online Guide
Inova Parkinson's and Movement Disorders Clinic (IPMDC) offers Recently Diagnosed programs, designed specifically for individuals who have been diagnosed with Parkinson’s within the last 5 years. These free, virtual sessions provide guidance and support to help you make informed choices regarding your health, knowledge, exercise routines, and lifestyle.

Download "Newly Diagnosed PDF.pdf"

Looking for a Movement Disorder Specialist (MDS)?

An MDS is a neurologist who has received specialized training in treating movement disorders,
who tend to be more familiar than other care providers with the full range of symptoms and treatments for Parkinson’s.

University of Rochester
Medical Center

Movement Disorders Unit

Our Team

Neurology Associates
of Rochester

Providing Comprehensive Neurologic Care

Our Providers

Rochester Regional Health

Movement Disorders

Our Providers

Wellness Services

Drive On
DriveOn, is a driving school located in Upstate New York that helps people of all ages and abilities to drive safely and confidently. Whether your goal is to obtain or retain a driver’s license, our driver specialists will train you in a full range of roadway environments
https://www.rochesterrehab.org/driveon

Wellness 360
Wellness 360 offers physical therapy, massage (including myofascial release, deep tissue, and medical massage), mindfulness classes, and group fitness classes.
https://www.wellness360fitness.com/

York Wellness Rehabilitation Institute @ Nazareth University
The York Wellness Rehabilitation Institute at Nazareth University offers pro bono services to individuals with PD who are underserved because of financial, insurance or geographic reasons. Nazareth students, supervised by licensed professionals, provide speech, occupational, physical and music therapy to clients with PD as part of its clinical education programs.

Preparing for a Hospital Stay?

These reliable resources provide checklists and forms that might smooth the way.

Parkinson's Foundation
Hospital Guide

For most people, being in the hospital is a stressful experience. For people with PD, symptoms may get worse, and new symptoms, like confusion or thinking changes, can develop because of stress, infection, fatigue, sleep disturbances, surgery or new medications.
Already a delicate balance, PD symptom management can be even trickier in the hospital because:

People often do not get enough movement opportunities.
Parkinson’s medications may not be given following the at-home schedule.
Medications that worsen PD are sometimes prescribed.
PD medication doses are often delayed or missed.

The Parkinson’s Foundation's Hospital Safety Guide is available to everyone in the Parkinson’s community at no cost to order or download.

Order your free Hospital Safety Guide

Davis Phinney Foundation
Hospital Stays

When you’re living with Parkinson’s, hospital stays—planned or unplanned—require special consideration.
Your motor symptoms can worsen when you are coping with a medical illness in addition to your Parkinson’s; so, during a hospital stay, you might not be able to move as well as you usually can. You might also find that some symptoms, such as tremor, dyskinesia, and freezing, worsen during a hospital stay or emergency room visit.

You can find Parkinson’s checklists, worksheets, and assessments to help you capture and share medical information at the link below. A few to complete and take with you during your hospital stay include “Prepare for Your Hospital Stay,” “Medical Summary for Your Doctor Appointment,” and “Daily Medication Log.”

Also, take with you the “Current Symptoms Summary,” which will make it easier for your hospital care team to understand and recognize your symptoms.

Worksheets, Checklists & Assessments

Mental Health Care

The providers listed below serve clients with chronic illness or medical issues causing emotional difficulties. *

Sigrid Adler, LCSW (Rochester) 585.747.6603

Molly Cypher, LMHC (Pittsford) 585.233.8572

Anne Lenox, LMHC (Brighton) 585.431.1327

UR Older Adult Services (Brighton) 585.273.5050

*Medicare and most insurance plans accepted.

Navigating mental health treatment options can be overwhelming – a clinical psychologist explains why it’s worth the effort

Published: July 8, 2024

Read the article

Live well with Parkinson's.
Get started now.

First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. In subsequent editions, it has gained international recognition as a superb and comprehensive resource for changing the way people live with Parkinson’s. Now in its sixth edition, the manual is the cornerstone of our new Every Victory Counts suite of resources, a robust collection of printed and digital manuals (including a new Every Victory Counts Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy of taking action to improve your quality of life with Parkinson’s.

Order a copy here

Let's discover the next breakthrough, together.

Want to improve research? Interested in neurology?

We’re building a registry of individuals with or without neurological conditions, and we want your help. If you sign up for the registry, our research teams will be able to contact you with future study opportunities that might interest you.

Visit our website to sign up and learn more!

Neurology Study Interest Registry

Focus on Local Fitness

Check for locations and times convenient for you.

Rock Steady Boxing

Whole-body exercise that will help your balance and fitness in community. Provides non-contact, boxing-based fitness curriculum incorporating techniques to improve cognition, vocalization, stamina, strength, and agility. Supports social connection through individual and team dynamics.

RSB directory

Rochester School of Fitness

The Rochester School of Fitness was founded by exercise specialist Mido Zelenjakovic and pediatrician Cathy Hahn in 2006 to provide comprehensive fitness programming for people of all ages and physical abilities, addressing the critical roles nutrition and healthy lifestyle choices play in achieving a positive self-image and overall wellness.

About RSF's Parkinson's Program

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Wellness 360 Physical Therapy & Massage
in Webster & Rochester, NY

The physical therapists at Wellness 360 are certified in PWR exercises, Parkinson’s Wellness Recovery, that are specifically designed to address Parkinson’s specific symptoms. Wellness 360 also offers multiple exercise classes that are specific to Parkinson’s disease including Rock Steady Boxing, Parkinson’s Cycle, Dance for Parkinson’s, and more.

YMCA

Schottland Family Branch

Offering Parkinson's Optimal Wellness and Boxing for Parkinson's

Learn More

Click on a logo to visit that site.

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Parkinson’s Disease Storybook

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 APDA

A Growing List of Resources

The resources above have been curated by board members and others within the Rochester Parkinson Network. If you know of a PD-savvy service or informational resource that is not listed, please share it with us.

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