An interview with Jo Rosen, President & Founder of the Parkinson’s Resource Organization on June 9, 2023 by George Ackerman, Ph.D, J.D.
Biography
After her mother, then five years later, her future husband Alan were diagnosed with Parkinson’s, Jo Rosen began by seeking out experts and people that had been through similar experiences. She wanted to know what living with Parkinson’s meant for each of them. Jo began the journey by reaching out to all the major Parkinson’s Organizations. She found that fundraising is what they wanted because of her background owning a financial management firm. She also found these organizations were not equipped to recommend support groups for caregivers, alternatives to traditional medical care, or coping with a future facing chronic illness. She began searching for experts in life planning – financial planning – medical care – memory retention – and self-care. The week after her wedding in 1990, Jo decided that her efforts in organizing a major Parkinson’s organization’s symposium at UCLA, were not going to provide solutions to their needs. She felt that if this was missing for her, then it was likely that thousands of others were facing the same challenge. So, she started what is now the 501(c)(3), Parkinson’s Resource Organization (PRO). Jo has been on a 30-year mission to work so that no one is isolated because of Parkinson’s. Every resource in PRO’s network helps emotionally support and provide education to families affected by Parkinson’s, even if the family is made of one.
Please tell me a little about your background and what got you involved with awareness.
I got involved because the first person in my life diagnosed with it in 1984 was my mother. My husband was also diagnosed. I started the organization to gather information. It was difficult to get because I was “only” the wife of someone with Parkinson’s and many ignored my attempts to seek information. I created the organization to have information all provided in one place.
Parkinson’s Resource Organization (PRO) was created more than thirty years ago to maximize quality of life for people with Parkinson’s and their families/caregivers through education, resources, and person-to-person support.
I conceived the organization when I found myself overwhelmed and struggling as a double caregiver for my mother and beloved husband (then fiancé) both diagnosed with Parkinson’s within a few years of each other. A born problem-solver, I figured if I could learn everything there was to know about Parkinson’s, I’d be able to “fix” it. Things didn’t quite work out that way. After traveling across the country to speak with doctors, researchers, and Parkinson’s organizations, I still could not find what I needed – dedicated caregiver support and practical resources for myself and my family to ease their journey through Parkinson’s.
Can you tell me more about the Parkinson’s Resource Organization?
It was only going to be a 5-year job because when my husband was diagnosed, the doctor said we would have a cure within 5 years. That did not happen, but I thought I would continue so 33 years later I am still doing my five-year job. The mission is working so no one is isolated because of Parkinson’s. Through the years I have researched many areas of the disease. Along the way I have been able to speak with scientists and doctors.
Parkinson’s Resource Organization is dedicated to improving the quality of life for families and individuals affected by Parkinson’s through education, support, and practical resources.
Our goal is to address the acute needs of the Parkinson’s community – namely caregiver support and resource pooling – we built several core programs:
Support Groups – Through dedicated in-person support groups for caregivers and people with Parkinson’s, we distribute new information quickly and build a community network that teaches and learns from itself.
Wellness Village Resource Directory – The Wellness Village is a free, virtual, vetted, digital resource directory of the best available providers and services within the Parkinson’s world, designed to ease the research burden and introduce constituents to a wide range of holistic and practical support services to navigate Parkinson’s and maximize quality of life.
Information & Education – Through our long-running newsletter, YouTube channel, and social channels, we educate audiences across the country – and the world – on the latest Parkinson’s news, tried and true lifestyle tips, research, and more. Open forums like our Village Meetings feature researchers, physical therapists, elder law attorneys, and more. One-on-one sessions with Jo Rosen provide direct access to over three decades of learned experience.
Memorial Wall – A virtual place to hold the memory of someone who lived with Parkinson’s or Parkinsonisms…and their family members, caregivers, and friends who were touched by Parkinson’s. A virtual place where family and friends can grieve and heal, gain solace and understanding, and virtually ‘visit’ their loved one. A virtual means of announcing the passing to a greater number of people than can otherwise be accomplished through a tangible publication.
As caregivers, people with Parkinson’s, and friends of the community, we know how isolating and all-consuming Parkinson’s can become. We hope the advent of a cure for this hideous disease will soon make our mission obsolete. Until then, our goal remains what it’s always been: working so no one is isolated because of Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I wanted individuals to get more involved. I work 10-12 hours a day trying to bring awareness to individuals with Parkinson’s or the family members. I also want to bring hope and solace that it is not the end of the world, just a new job. Most people after getting diagnosed go into depression. My job is to help them go forward in the most positive way possible.
What type of goals do individuals with Parkinson’s have when working with you?
I want to instill confidence in individuals to investigate and be more aware and I try to inspire them to look forward and move forward. I try to educate them to the greatest extent as I can. Because my mother passed away due to Parkinson’s, she donated her brain to the medical field for research. Testing came back and showed she did not have Parkinson’s she had Progressive Supranuclear Palsy. Words my family never heard of, so I investigated other illnesses and diseases. I have come up with at least 30 other Parkinsonisms that mimic generic or idiopathic but react differently. I enjoy opening the minds of people. Just because they have the signs, it may be a different form which helps with treatment.
Originally conceived as Children of Parkinsonians (COPS), “out to arrest Parkinson’s,” the organization launched in 1990 with a $300 donation of stamps and supplies for our very first letter-writing campaign.
Since then, we’ve helped well over 32,000 people with Parkinson’s and their families across Southern California, the greater U.S., and abroad.
What type of training do you provide and how long are the programs?
We provide support, education, and emotional care. It is done through support groups. We have around 6-8 types of support groups. It has grown since the pandemic since zoom (online) has helped us reach more areas and individuals that may not have been reached before.
We have a mindfulness program; grief groups and I co-facilitate the groups to ensure everyone is in line with what they are taught or learning. We also have a monthly newsletter and blog. We also have a virtual vetted video driven resource directory on our website for Wellness.
What effect can your programs have on an individual with Parkinson’s?
I believe they feel empowered. I have been told I bring joy and a touch of peacefulness to their lives. People enjoy living through my experiences.
People with Parkinson’s – available resources for people with Parkinson’s or Parkinsonisms include dedicated emotional support groups, information and education, one-on-one coaching, and more.
Caregivers & Family – available resources for people caring for, living with, or otherwise supporting a person with Parkinson’s or Parkinsonisms include dedicated emotional support groups, information & education, one-on-one coaching, the Memorial Wall, and more
Service Providers – available resources for service providers and business partners include our Wellness Village Resource Directory, newsletter participation opportunities, event sponsorships, and more.
What would you like to see as a future goal for Parkinson’s Resource Organization?
I would like it to go out of business and have a cure in its place.
What events do you participate in?
I mainly work with our organization. Our goal is to reach individuals who need assistance. If we help 1 person and that person is doing better, then we have done our job.
How does this also assist the caregivers?
We assist them greatly by offering specific caregiver programs and support groups. Helping caregivers is a primary goal for us.
How can someone get in touch? What is your website?
www.parkinsonsresource.org or (877) 775-4111
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
I would say open your mind, open your heart, and look for the answers instead of waiting for other people to give you or come up with the answers. I think if individuals really go for it, then we would find answers before others may come up with results.