There is so much that we need to do to improve the lives of those living with PNES. We definitely need to increase treatment options and to ensure a growing number of clinicians are available to treat this health condition. To achieve this, research on treatment outcome is a necessity, and as such, funding is required. Until now, clinical trials have been conducted on relatively small samples [except for a recent study that examined the effectiveness of CBT–CODES– in the UK] in cognitive behavioral, psychodynamic, and mindfulness-based and group therapies. Much more is needed if we are to provide effective treatment for patients.
We also must provide professional education for providers involved in the diagnosis, but more importantly, the management and treatment of PNES. And, let’s not forget, we must do everything we can to educate the general public so that it comprehends the severity of this disorder and the humanity of those who suffer with it. The stigma associated to PNES and FND is a major hurdle the community faces daily.
So, it is with the greatest excitement and pleasure that I introduce Monica Park to all my readers and ask that you share this very positive information with others.
Monica Park is the new Executive Director of FND Hope US and with her presence on the scene, all of those issues I mentioned above are looking brighter.
I asked Monica to tell us about herself and her immediate plans.
I currently live in Chicago, IL with my 8-year-old bulldog, Atticus, but I grew up in both Apple Valley, Minnesota and Seoul, South Korea. I studied journalism and psychology at Northwestern University and ventured into marketing and small business development before taking time off for my health. As many living with symptoms can attest, living a functional day-to-day life can be difficult, and I became determined to find ways to improve these circumstances not only for myself but for others in my position as well. My experiences at a non-profit out of Korea that advocates for end-of-life decision rights for elderly patients and at Ann & Robert H. Lurie Children’s Hospital in Chicago as an in-patient bedside volunteer helped fuel a passion for patient advocacy and support. I am now very excited to be a representative of the PNES community at FND Hope US where I am hoping to help educate both the medical community and the general public about non-epileptic seizures, reduce the average diagnosis time, and improve the lives of those living with symptoms.
How did psychogenic non-epileptic seizures enter your life?
In 2009, I had my first seizure, lost sensation in both of my legs and was paralyzed for three weeks. I was 18 years old, a freshman in college and had only recently left my entire family in Korea to come to the US for school. My story continues in much the same way as those of others with non-epileptic seizures: my diagnosis took seven years to come by, during which time I encountered what felt like an endless road of obstacles, confusion and mistreatment while maneuvering the medical system in search of a cause for symptoms often deemed fake. Those seven years involved much of the usual, including erratic episodes of seizures, paralysis, organ failure, countless emergency room visits, dismissive doctors, accusations of “faking,” prescriptions for medication for conditions I did not have, exorcisms, the discovery or formation of other symptoms and disorders, unemployment, depression, loneliness and more. Despite all of this, I considered my experience comparatively a very fortunate one. This was a problem I knew I needed to help solve.
What does FND Hope do?
FND Hope is a non-profit organization and community made up entirely of volunteers who advocate for, support and empower those with functional neurological symptoms, including PNES (referred to as “functional seizures” on our website). FND Hope provides peer-to-peer support groups, Facebook community groups and provider information for its community and also represents those with FND at various conferences, research opportunities and within the medical community. FND Hope has worked with the American Epilepsy Society (AES), American Brain Coalition (ABC), FND Society, the National Institute of Neurological Disorders and Stroke (NINDS) as part of the National Institute of Health (NIH), as well as with professionals and programs at the Cleveland Clinic, Emory University and Stanford University. FND Hope uses public donations to fund its advocacy efforts, research and program offerings.
I have joined FND Hope US with the goal of helping PNES patients in the US access a sense of community and growing our efforts here. Those in the US, as well as FND Hope members across the globe, will be able to access more programs and engagement opportunities moving forward.
What are your plans in the near future?
We are starting a weekly movement program that incorporates Pilates, movement therapy, breathwork and other exercise and wellness elements to help patients stay active while engaging with the community. We are also very excited to be hosting the annual PNES conference in October this year. The conference will be held virtually to increase accessibility and will include topics for medical professionals, patients and caregivers. More information on these and other events will be available through our monthly newsletter and community outlets, which can be accessed through our website at www.fndhope.org.
I know you will join me in giving Monica a very warm welcome and expressing our appreciation to her for having stepped up and taken on such an important role in the future of the PNES (FND) community! Feel free to share this good news with others.