Seizure Star: Monica Park, Executive Director FND Hope USA
Monica Park is the new Executive Director of FND Hope USA, a non-for-profit that represents and supports persons living with functional neurological disorders (FND) including psychogenic non-epileptic seizures (also known as functional seizures). The cause of FND is not well understood. It can be triggered by neurological issues (e.g., head injury), other forms of physical stress or psychological stress and trauma. Seizures can be one symptom in FND but there can be others such as paralysis, tingling, difficulties speaking or swallowing, etc.
How and when did seizures come into your life?
I have had functional neurological disorder (FND) symptoms since I was a child, but I had my first seizure at the age of 18. I had recently left my entire family in Korea to come to the US for university. My symptoms up to that point had been difficult but manageable, quickly attributed to "growing pains" or a "naturally weak immune system" causing various "flare-ups." The seizures were more difficult to dismiss, especially as they quickly led to paralysis and more extreme presentations of my other symptoms.
Tell us a bit about what your journey to find proper treatment was like?
It was very difficult for me to find "proper treatment" for my seizures, not only because I was navigating my care alone but because, as many others have experienced, it seemed that no one had ever seen my symptoms before. I was repeatedly told that I was faking my seizures, lying about my pain, and that I was imagining everything. It took seven years to find a neurologist who would diagnose me with psychogenic non-epileptic seizures (PNES). Afterwards, he apologetically excused me from his epilepsy clinic saying that there was nothing he could do to help.
It did not get easier after receiving a diagnosis. Not only were there no providers in my area who specialize in PNES, the diagnosis affected every other aspect of care I received. Even when in the hospital for issues such as neutropenia or organ failure, I was treated as a patient who might be malingering for access to drugs or for attention. Behavioral health treatment was also colored with skepticism and a tendency to rush to labels and to medications that were not in line with my needs but more focused on explaining why I would "fabricate" the severity of my condition. None of this acknowledged the very real needs I had both physically and emotionally in managing my seizures and navigating daily life, let alone the effects of invalidation within the process of navigating care.
I ended up working with multiple different providers, none of whom had any prior knowledge of PNES, focusing on very specific symptoms with each as I learned skills and reinforced my understanding of myself. I learned how to better understand my body and the messages it was sending me, as well as the connections across my mental, emotional and physical needs. I still experience symptoms and seizures today, but I am better able to manage them and function day to day. This process involved a great amount of trial and error and continues to require constant management and awareness.
What prompted you to begin looking for ways to be an advocate for psychogenic non-epileptic seizures (functional seizures)?
I strongly believe that any discussion of functional seizures ultimately touches on questions about how we communicate with others, how we express our needs, how safe we feel in our own bodies -- these are very real questions that bring to light the needs we have as human beings. It is incredible to me that an entire population of individuals who are struggling with very real physical debilitations can be so overlooked and so actively dismissed, purely due to ignorance.
It seems that lack of information is an issue for all individuals involved. As a patient, I did not feel confident that I knew enough about my condition or what options I had moving forward. With so much discrepancy in the available information, and so much inconsistency in ability to access treatment, it became clear that the overwhelming nature of the process itself is an obstacle that causes additional distress to any patient, caregiver or even provider navigating the complexities of this condition.
I have had PNES for over a decade now and, despite my own increased capability to manage my symptoms and despite the fact that there is more information about PNES available, things have not gotten easier. It remains incredibly difficult to find information, to navigate care and to explain my condition to doctors, employers, teachers and community members. It still feels like I am fighting an invisible battle. I found myself questioning the reality of my own condition at times because of the lack of understanding in those around me as well as my own confusion about my needs and ability to find support.
I realized that this should not be the case and looked for ways to change this experience both for myself and for others in my position.
Tell us about everything you have been doing and what is to come?
I found FND Hope very recently during a search for organizations advocating for seizures, which was a surprise because I did not even know that PNES falls under the umbrella of FND. It was a wonderful realization to find an existing community of volunteers who have shared my experience and are working to establish change. I joined the FND Hope US team with the intent to bring more focus to functional seizure advocacy. My goals include helping patients like myself gain more access to information and resources, with hopes that more visibility when it comes to providers, their work and research, and a better overview of one's options can help empower us in our personal day-to-day advocacy. I also hope to spread awareness and to educate our communities in order to develop more resources and to decrease the number of obstacles that stand in the way of improvement.
We are in preparations to host the 2021 Virtual Non-Epileptic/Functional Seizure Conference in October. Patients and caregivers have chosen the topics for this conference, and we are very excited to invite some of the leading experts in the field to help lead these discussions. I am hopeful that this will lead to more conferences and other events where patients and caregivers can learn from medical experts, share their input, and ultimately help impact the future of PNES management.
For our patient and caregiver communities, we are introducing a weekly virtual Movement Class. Shane Rhoads and his team at Movement Med (www.movementmedchicago.com) will be leading weekly 30-minute classes designed specifically for those with FND. We are also working on further developing our monthly virtual Peer Support Group. Moving forward, we hope to collaborate with providers to host informational seminars at these meetings as well.
FND Hope US will also be working on educational initiatives. We are working with existing clinics and providers to develop and share educational materials, research opportunities and other programs, which we hope will help facilitate growth and innovation within the field and encourage collaboration and shared knowledge across clinics, as well as to patients and unaffiliated providers. We hope to continue developing our provider listing and to connect with more available treatment programs. We also hope to work with other organizations and our local communities to provide information and to raise awareness within our schools, hospitals and emergency first responder teams.
As we continue to build our organization, we will be putting more emphasis on growing our FND Hope US team of volunteers and joining with other advocates to realize our goals and to find more ways to support patients, caregivers and their loved ones. My genuine desire is to ensure that no one feels alone as they learn to manage their symptoms, and that they know that people who care and understand their experience are here to provide support and to inspire hope.
To read more about FND Hope USA, visit this page: https://fndhope.org/usa/
