FND and Me!
Written by Kristina Bridgen, BCPF Member & Presentation Team
September 6, 2023
People living with Functional Neurological Disorder, also known as FND, have many daily struggles as it is an invisible divers-ability. Let me back track here though … what is FND, you might say? It is where the brain and body send and receive signals incorrectly, which causes many symptoms. In my case, my symptoms are Non-Epileptic Seizures, also known as Functional Seizures. In the past, I have had other symptoms that really impacted my life, such as gait issues, and tight muscles in my legs which effected my walking requiring me to use a wheelchair for a few years. With will power, determination and strength I was able to walk again.
This invisible divers-ability is not known much about by our society, doctors, or nurses, making it hard to live with. It is considered a disorder that is between neurology and psychiatry, but often neither want to take on the complication of a condition that is not really known about but is common. However, with advocacy of top researchers, specialists, and people who are self-advocates like me, more people will know about this condition.
You may be wondering how does FND affect my life and many others? I would say it depends on how often the symptoms occur, but most often they are debilitating. For me my symptoms have come and gone throughout my whole childhood and now adulthood. There were times I went seizure free for years and then there were years I had many hospitalizations, with visits to ICU. It affected my schooling to complete my early childhood education and my ability to keep my dream job working with children. I will never give up my goal to work with children because that is what I am passionate about. I may have to adapt, because of the way my body and brain send and receive signals saying sensory overload, shut down, seizure, but I will find my way. Another way FND affects me is socially. This is due to not having the ability to go do activities with friends. I am grateful that I have my sports though Special Olympics, but even then, there have been some challenges.
You may be wondering what may help with the symptoms of FND? I find meditation before bed every night helps me sleep, but I also try mediating during the day. I often use a fidget spinner when out at stores or somewhere that is overstimulating, so it regulates my body. If it is noise stimulation, I use noise cancelling headphones. I also use grounding techniques like 5,4,3,2,1 which uses all 5 senses: see, hear, feel/touch, smell, taste.
A little about me, I am an adult with a divers-ability. I have a passion for self-advocacy, art and playing sports, (such soccer, and 5 pin bowling) and working with children. I have worked with infants and toddlers for three to five years at daycare/preschool and I loved each experience. I am a member of CLBC Community Council, and we talk about variety of advocacy topics in my city of Nanaimo BC. My friend Amanda started a BC People First self-advocacy chapter in Nanaimo, and I am part of that, and we are currently looking for more members to join our conversations. Overall, my hope and dreams are that Functional Neurological Disorder gets more acknowledged within the medical community, and that people learn how this condition affects people who have it. It is not easy to live with, I am determined to live my best life with this condition. If you would like to learn more about FND go to: fndhope.org
Written By: Kristina Bridgen
When all is quiet,
My body isn’t
I feel Tingling in my body,
Electricity buzzing in my head,
I feel funny
No way to describe how I feel,
My body tenses up and I seize
Convulsing, foaming at the mouth or just blanking out
I lose consciousness and I don’t remember when I come too.
Occasionally I hear people saying “she is faking it”
Or that these aren’t real seizures
Let me tell you
They are real,
They may not be epileptic and appear very different.
I can tell you the feelings, I feel are real,
Embarrassment, tiredness, soreness, losing control,
Or being too hot or cold
Can cause me to seize.
These are just somethings
I go through.
Lucky to know ways to calm.
Calm, my body and mind
With mindfulness and deep breathing
I can lessen the intensity,
But sometimes that isn’t enough
To take the funny feeling away.
Needing to take medication to calm and that is okay