An interview with Lynne Gotham from Parkinson’s Partners of NW PA on August 28, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
My name is Lynne Gotham and I am the executive director of Parkinson Partners of Northwestern Pennsylvania, that serves NW Pennsylvania, Western New York and Northeastern Ohio. My dad also had Parkinson’s, so PD has been a part of my life since I was a junior in college. If you told me when my dad was diagnosed, that I would be running a PD nonprofit today, I would have said you were crazy, but life had other plans for me. I truly think God placed me where I was meant to be. My background is in health education and promotion. I started writing the newsletter for Parkinson Partners in 2002 when I quit my full-time job to stay home with my 3 children.
A few years later, I was asked by the board if I would work for them, part-time, coordinating the organization’s activities. Three years later I was asked to take on the additional role as American Parkinson Disease Association Information and Referral Center Coordinator. That funding was discontinued in 2013 but new funding was found to make my two part-time positions, one full time position. I do think my family’s experience helps me bring a unique perspective to my role. I know what it is like to watch someone I love to face the challenges of PD and how that impacts the entire family.
Can you tell me more about your Parkinson’s Partners of NW PA?
Parkinson Partners of NW PA was founded in 1992 by 5 couples who met in their neurologist’s office and realized that there were no support groups or educational opportunities for those with PD in Erie, PA or the surrounding areas. Those with PD would have to travel 2 hours to Cleveland, Pittsburgh, or Buffalo to access PD-specific support. They spoke to their doctor and with his help, had their first meeting in April of 1992. The group has grown to include both in-person and virtual support groups, annual seminars, a PD-specific wellness program, respite care program, information and referral line, transportation grant, social gatherings and more. We remain the only nonprofit in the region providing these services, with over 1,000 interactions per month.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My dad was diagnosed with PD in 1990, when I was a junior in college. This was before everyone had access to the Internet. Since I had access to a college library, I would do research on PD and bring it home for my dad to read, especially when he was going from doctor to doctor to get a diagnosis. My parents became involved in Parkinson Partners, attending their first-ever meeting in April 1992, one month after my dad’s early retirement at the age of 58. When I graduated, my parents “volunteered” me to write the organization’s first brochure since I had a journalism/public relations degree. Over the years, I helped with other projects as well. Having parents so involved in PD support groups helped me see the value of people working together to spread awareness, also focusing on the hope for better treatments and a cure. They also found kindred spirits in other members; people who understood what they were going through because they were also living with PD.
What type of goals do individuals with Parkinson’s have when working with Parkinson’s Partners of NW PA?
I meet people with PD at different stages but one thing they all have in common is that they want to be seen as individuals. They are not PD; they may have a diagnosis of PD but it is not who they are. They do not want PD to define them, and they want to live their lives on their own terms, as much as possible. I want to do whatever I can to provide support, education, services, and a listening ear to help them on this journey, that no one asked to be on. I also want to be a support to their spouses and loved ones who also got thrown into the PD world. Most of all, I want all of them to know that they are not alone.
What type of training and how long are the Parkinson’s Partners of NW PA programs?
We have several programs so training varies with the different programs. We pride ourselves on partnering with other organizations in the community so that we are able to offer important outreach and programs despite our small size and a staff of only one. We have found that often other organizations have similar goals and welcome the opportunity to work together. Some of the other organizations have specialized training needed to provide the services to our PD community. We leave the competitiveness behind and focus on how we can accomplish the most, working together. Program lengths also vary, for example our respite care program is year-round, but our wellness program is offered 3 times a year, working around the academic calendar of our partner, Gannon University Occupational and Physical Therapy Programs. We know that our wellness program has some unique features so we have shared the lessons we have learned with local, state, national and international conferences, hoping to show other small nonprofits what they can do with community partnerships.
What effect can Parkinson’s Partners of NW PA have on an individual with Parkinson’s?
Our programs provide opportunities for people to connect with others in the PD community, to access resources that can help them deal with PD challenges and provide practical, affordable options for wellness, education, and support. Most people find that getting involved with the programs has a positive impact on their lives even if they were afraid to connect in the beginning. Often the fear is made more manageable when they realize that they aren’t alone, and that help is available.
What would you like to see as a future goal for Parkinson’s Partners of NW PA?
As a small nonprofit, our biggest goal is just to keep going year after year as funding becomes more challenging. We have lots of ideas on how to provide more worthwhile programs to our community but with only one employee and uncertain funding, we must also spend time fundraising and grant writing so we can continue to provide these needed services to the PD community.
What events do you participate in?
I have attended local, state, national conferences and trainings and have also attended the World Parkinson’s Congresses in 2016 and 2019, as a poster presenter and eager learner.
How does Parkinson’s Partners of NW PA also assist the caregivers?
I believe that caregivers play a vital role in the overall health and wellbeing of a person with PD. Their tireless devotion and care of their loved one also comes at a cost to their health and freedom. They become more than spouses or family, they become nurses, case managers, advocates and more. EVERYTHING we do for those with PD impacts the caregivers. We also provide special programs just for our caregivers to help them on their journey.
How can someone get in touch? What is your website?
Our website is www.parkinsonpartners.org and our phone number is 814-899-3030.
How can others also become advocates for awareness?
It is important that families take an interest and learn more about PD and how it affects their loved one. The time to learn about the disease is not after an emergency when emotions are high, and decisions must be made quickly. If families stay connected and truly see the impact the disease has, they will be better prepared to advocate for their loved one and for the greater PD community as well. They can also be an example for other families and even be a voice for the PD community for better research, support, funding, and help.
What are the most important things you’ve learned?
One of most important things I have learned is that PD is different for everyone. This is a phrase that is thrown around a lot and may be hard for people to believe, but it really is true. No one should look at one person with PD and assume that they are exactly like anyone else with PD. Symptoms, treatment plans, quality of life, etc. can vary widely from person to person. It is important to always keep that in mind and to never assume you understand someone’s story just because they have PD. The other big lesson I’ve learned is that it is imperative to be prepared for PD or life to change course.
Most people adjust to what PD has brought to their lives with a caregiver providing more assistance. But they often don’t think about the fact that caregivers get sick too. They frequently don’t have a backup plan if the caregiver can no longer provide the care. People with PD also have other health concerns. Is there a plan to deal with that? My dad had a significant stroke that caused much more disability than the PD did. Our family was caught completely off guard. Dad did a good job managing PD, adjusting as needed for more rest, daily exercise etc. But the stroke brought disability overnight that made it much harder for him to deal with PD symptoms. We assumed he’d always do well…until he didn’t. We didn’t heed the advice to have a plan B, C, D, etc. to deal with changes. My mom was thrown into a significant role as a caregiver and had to deal with the financial impact of the stroke. Their home was not equipped for the new physical challenges. Their financial and legal affairs were also not for this level of disability. We learned the hard way, that making decisions in a crisis is difficult and extra emotional. I always make it a point to share our family’s story so that others can learn from our mistakes.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I have had the privilege to have met so many beautiful, strong, resilient, hopeful individuals in the PD community, but hope needs help! Don’t go at it alone! We are stronger together, always looking forward to the day we have a cure!