An interview with Anissa Mitchell, LCSW Chief Program Officer Parkinson & Movement Disorder Alliance on October 5, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I am a clinical social worker and have been working in the healthcare arena the majority of my career in a variety of settings. In the last 13.5 years, my focus has been solely Parkinson’s and movement disorders. I spent ten of those years as the manager of an outreach program at a large hospital in Orlando, FL developing and facilitating support groups, wellness programs, educational classes and providing counseling. The past 3.5 years I have been working with PMD Alliance, a national non-profit that serves Parkinson’s and other movement disorders in very compassionate and innovative ways.
Can you tell me more about your advocacy?
My advocacy has changed with my roles. Previously when I was the outreach manager, I did a lot of direct-service programming and support helping people understand their diagnosis, work through the adjustment to it, engage in wellness programs and self-advocacy. In my current role, my focus is a bit broader but with the same goals. I oversee our programming which is a variety of formats including online, in-person, didactic education as well as discussion based, and includes empowering people to become community leaders and advocates as support group leaders and ambassadors. Organizationally we seek to empower people through education and galvanize communities to be networks of support.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I sort of fell into my work with Parkinson’s. I was in need of a full-time job, wanted to be in healthcare. The job at the hospital was posted and the job description was one I had the right experience for in terms of tasks. I had some experience with Parkinson’s, but it was limited. It was going to turn out to be more than just a job. I was actually told by one of the administrators at the hospital that I was a Parkinson passionary. I seemed to have this passion and vision to help those impacted by PD. And, within three years of working in the Parkinson Outreach program, my mother was diagnosed. So, it become personal. I not only wanted people to live well with the disease, I wanted people cured of the disease.
What type of goals do individuals with Parkinson’s have when working with you?
In my current role, there is not any formal goal setting. I help develop and deploy programs of all sorts. Patient education, online support groups, care partner programs, in-person programs, and even some healthcare provider programs. The goal is likely similar, yet unique to each participant. Some come to learn more about the disease, some come to connect with others and reduce isolation. My goal is to provide a variety of opportunities through various programs for people to connect, learn, and feel equipped to manage the disease and live the fullest quality of life possible.
What type of training and how long are the programs?
General programs online are around an hour long. We have some that are longer such as a care partner program Getting Real Virtual or our Support Group Leader fundamentals training. In person programs can also vary by type but usually are half-day programs.
What effect can your advocacy have on an individual with Parkinson’s?
Feeling of connection, self-efficacy, inspiration, normalization of feelings.
What would you like to see as a future goal for your advocacy?
We are always evaluating what our community’s needs are. We are very good at quickly responding to those needs so that is an ever-evolving goal. But ultimately, it is to address unmet or under-met needs.
What events do you participate in?
I am not sure what this question is asking since we put on events. However, if you are asking about larger advocacy events, we attend the World Parkinson Congress. We have attended the Unity Walk, most recently Coachcon with RSB.
How does your advocacy also assist the caregivers?
We serve the entire ecosystem, but one of our specialty focus is the care partner/adult child. We have a variety of programs specifically to support them as well as a toolkit. In person, we offer our Renew Retreat which has two tracks one room for the person with Parkinson’s and the other for care partners, and while both rooms receive education and support, the care partner is the main focus. We provide education around their educational needs as well as discussions. Online, we offer Getting Real virtual which provides care partners with education and support based on where they are in the journey, so the program is geared to newly diagnosed, intermediate, and advanced PD. We also provide a variety of resources in our CP toolkit that is used during both the Renew Retreat and the Getting Real Virtual programs. Additionally, we have Getting Real Online which is an on-demand library of short educational videos and a bi-monthly social work facilitated support group. We also have care partner focused education in our general neurolife online programs.
How can someone get in touch? What is your website?
PMDalliance.org or 800-256-0966
How can others also become advocates for awareness?
We have an ambassador program where we leverage people’s gifts, talents and passions to serve the greater PD community that people can join. Tied to that or apart from that, we have our support group leader training and ongoing resources to equip people to serve their communities as support group leaders.
In your opinion what is the key to effective advocacy?
Passion married to a purpose that fits a need.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are unique in your experience with Parkinson’s, but you don’t have to be alone.
We’re the Parkinson & Movement Disorder Alliance, “PMD Alliance” for short — an independent, national nonprofit dedicated to providing opportunities for people to learn, live more fully and spark meaningful connections around them.
More than 40 million Americans are affected by movement disorders. It’s a challenging reality — one we cannot face alone. That’s why we play differently.
PMD Alliance reaches across all communities and partners, including our sister organizations. Yes, in a world where genuine collaboration can be tough to find, we treasure it! Our journey is a team sport.
We’re always people-oriented. Whether it’s those living with a diagnosis, their care partners, adult children or support group leaders, we meet the needs of those we serve by providing solutions that fundamentally enlighten, inform and incite positive change.