An interview with Kathryn Wiesmann from the American Parkinson Disease Association Virginia: Together for Parkinson’s! on 2024 by George Ackerman, Ph.D, J.D.
Biography.
I have a master’s in public health and have previously worked for a movement disorders clinic, as well as an area agency on aging before coming to APDA. My background includes working with families, older adults, and college students doing a variety of teaching and education, research, and community engagement and advocacy work. I enjoy doing a little bit of everything, variety is the spice of life
Can you tell me more about your organization?
APDA Virginia is a branch of APDA which focuses on working to provide resources, education, and Parkinson’s awareness to the state of Virginia. We focus on creating a space and place for the community to learn about Parkinson’s and connect with us to help the Parkinson’s community learn more about resources in their area.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I got involved working with the Parkinson’s community during the pandemic. I started working for a movement disorders clinic in Georgia where I was acting as a community program coordinator for people with Parkinson’s, essential tremor, Huntington’s disease, and more. As a part of that role, I worked closely with our Georgia chapter to help set up support groups and bring more Parkinson’s resources to my area in rural Georgia. After I had begun working there, I had reflected on my own connection to movement disorders when my grandfather became diagnosed with Lewy Body Dementia and my other grandfather had experienced a Parkinsonism type diagnosis in a late stage.
What type of goals do individuals with Parkinson’s have when working with you?
Generally, when we get calls or someone reaches out, they are looking for local information about a neurology referral, physical or speech therapy information, or most importantly – support groups and outreach. We do get a few individuals who call wanting to talk through and debrief either an appointment they had or chat about what’s to come and their options.
What type of training and how long are the programs?
We offer trainings for healthcare professionals and allied health team members such as physical therapists, home health aides, assisted living and nursing home staff, as well as general trainings for any professional who may work with the Parkinson’s community and a specific Parkinson’s and EMS training.
What would you like to see as a future goal for your programs?
One of our goals is to plan more social events! We would love to host a gala or some fun fundraiser to help us spread awareness and raise funds for the chapter. The Optimism Walk is a great way for us to do this, but we are always thinking of new ideas to get people to connect at events or programs that are not so heavily education focused. Learner, caregiver, and information seeking burnout is a real issue and if you know APDA we work hard to make our education programs as easily accessible as possible. So, we would love to focus on some fun events!
What events do you participate in?
Our biggest event is the Optimism Walk! We love having it every year and it is our biggest fundraiser. The Optimism Walk helps us to raise funds for the chapter to create new educational programs, allows us to expand our outreach to underserved areas for Parkinson’s, and helps to support some of our resources such as our financial hardship program.
How does this also assist the caregivers?
This year we are working on having more care partner resources and services available at the walk! We are always looking for input on how best to serve our at-home team members.
We have recently partnered with a regional Parkinson’s resource in Richmond – Power Over Parkinson’s – to start a care partner support group! They meet monthly and we have an activity for their person with Parkinson’s occurring in tandem with their meeting. Our first meeting was in January and we had over 13 couples attend!
How can someone get in touch? What is your website?
We are reachable by email at apdavirginia@apdaparkinson.org or by phone 757-495-3062.
Additionally, we can also be reached via our social media on Facebook (/apdava) , Instagram (@apdavirgnia) , and LinkedIn /apdavirginia
Our website is www.apdaparkinson.org/virginia
How can others also become advocates for awareness?
By joining APDA Virginia as a volunteer! We are always looking for passionate individuals to help us attend local community events in their area to help raise awareness for Parkinson’s resources. We also love volunteers who want to learn more about how we function as a grassroots organization and do some behind the scenes volunteering such as helping set up education programs or learning about how we apply for grants.
What is the most underutilized or less thought of resource that organizations like APDA can help or investigate in your community for Parkinson’s?
Could be a day -to-day related resource or dream big and think of something that we could maybe work towards? – For us, we would love to see more advocacy efforts made stronger by our state legislature to help with Parkinson’s data reporting by health departments. Better data means better outcomes!
In your opinion what is the key to effective advocacy?
The community involvement. Government and advocacy only works if we get involved and express our thoughts. Each person has their own set of skills that they may not even realize could be beneficial either from a previous job, maybe they have a knack for discussion, if you’re good at writing or analysis, we need diverse voices, diverse experiences, and people from all parts of Virginia to find their niche in how they can help contribute to the fight against Parkinson’s.
How can we better fundraise to support a cure for Parkinson’s?
Creating your own fundraiser or helping APDA Virginia connect with different fundraisers anywhere in Virginia is probably the easiest way to help make a difference. APDA Virginia fundraises 100% of our resources for the Parkinson’s community and also contribute as a chapter to the national research funding to learning how to best fight or find a cure for Parkinson’s. Supporting any APDA chapter is a great way to make sure your donation is guaranteed to go towards fighting Parkinson’s disease, see progress and invest in your Parkinson’s community, and see the research efforts come to fruition through our national research grant award program that chapters contribute to.
Why should people who don’t have Parkinson’s care about this?
In an ideal world, we all care about everything – just because it doesn’t affect you now doesn’t mean you are not at risk or that it could never happen to you. The same can be said with other chronic illnesses and situations. However, for Parkinson’s disease, a lot of the awareness is targeted to people who already are diagnosed or those in an older adult age range. Parkinson’s symptoms can start as early as in your early 30s and if you have not had the opportunity or if life has not allowed you access to information about Parkinson’s, you could brush it off or never know what your risk factors are. Our goal with the chapter is to find creative ways to do our community outreach and work towards educating Virginians who live in areas where they may have a high risk, or educating those who may not traditionally have “fit the diagnosis bill”, if you will, about what Parkinson’s means and how chronically underdiagnosed it is, especially since we have a medically underserved geriatric and neurology specialty shortage. If it does turn out that you are not personally at risk or Parkinson’ won’t personally affect you, you can thank your lucky stars but also be armed with the knowledge of the possibility of Parkinson’s and begin to actively listen and look in your community for people who also may have not known about Parkinson’s and spread awareness that way. Knowledge is power and health is wealth!
Have you had any family members or relatives affected by Parkinson’s disease?
I have had a grandfather who was diagnosed with Parkinsonism. He had been experiencing some similar symptoms but they were not able to conclusively diagnose full Parkinson’s. Additionally, my other grandfather had Lewy Body Dementia, another movement disorder on its own, but can result from Parkinson’s in some as well. The road to their care was a strenuous one for both of my living grandmothers, they put all they had into caring for the one they love and I find purpose now in this position being able to help others who had a similar experience manage that journey. The sacrifice that goes into becoming a full-time care partner and transition from “spouse” to “team member” is a part of marriage, family, and connection with others that we don’t tend to think about until it’s time to face that challenge. I love them very much and hope I can provide some accessibility and comfort to those going through “it” to help ease the knowledge, research, or resource burden so care partners can focus on trying to get back some sense of normalcy if they are able with their partner.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
The Parkinson’s community, is just that, a community. No one achieves anything alone and your health is strongest when you have purpose and are engaged with your peers. Reach out if you are struggling even if you feel its trivial, you are not an island and do not have to be.