Glimmer Of Light

June 2021

Some people with FND (Functional Neurological Disorder) often go years suffering with symptoms before they get an FND diagnosis. I was lucky in the sense that I was diagnosed just a few months after showing extremely frequent symptoms. Once symptoms show, a person can have them for years. FND is often misunderstood in the medical field because you are seen by a neurologist and also a mental health professional (psychiatrist and therapist) to assist with treatment. Each person can vary with severity of symptoms. Some people are bed ridden while others can hold a job and then everything in between. There isn’t a miracle pill that will make your symptoms go away. It takes a lot of hard work, many different types of therapy and even then people may see no improvement.

Since my hospitalizations in March through early May, I have made huge gains. I have made a daily schedule that copied my routine from the hospital. I added exercise and outdoor time that allowed me to get into shape. Two of my new medicines have caused a weight gain and I need to work on that. On a daily basis during the work week, I work on various mental and physical skills. For forty five minutes to one hour, I work on grounding skills, coping skills, outdoor time (gardening, weeding, etc.), and working out. I also see my therapist and psychiatrist every other week. Not sure if it’s because I am busy following my schedule, the new meds or a combination of both, but I’m feeling like my old self. If I’m having some vision issues, internal tremors or any weird sensations I make sure to use a variety of skills that are becoming second nature to me. I will use the 5,4,3,2,1 for example. I would say 5 things I see, 4 things I can feel, 3 items I can hear, 2 I can smell and 1 I can taste. Another skill I have used is stating the steps to make a certain dish like grilled cheese. I would go over step by step on how to make it. The point of these skills is to distract your mind onto other things. It sounds easy enough and should be common sense but…..

I have been dealing with FND symptoms for 4 years now. Such symptoms over the years include: non-epileptic seizures, tremors, poor balance, numbness, sound sensitivity, word retrieval issues, eating issues (choking), weakness/fatigue, problems with urinating, GI issues, mobility issues (not being able to walk), and trouble multitasking just to name some. Now, I only have tremors (but very few), trouble multitasking, GI issues and a substantial decrease in seizures. I had only one seizure last month and none this month. Even just typing that it feels surreal to go that long without a seizure. Surreal but lucky and thankful.

This summer is going to be wonderful, I can just feel it. There is so much to do in our town. I already put on my life vest, just in case of a seizure and went kayaking a few times and also on a paddleboard. There was a time when I did paddleboard yoga and now I’m just trying to stand on it again. But, baby steps right? I did great! I was definitely wobbly but I didn’t fall in so GREAT success. I’m starting to hang out with friends on a weekly basis and enjoying their company in the sun. We have a vacation planned in August which is more on the relaxing side. We weren’t sure how I would be feeling so we went for calm over exploring. But, only if we knew I was going to be this good we may have picked differently. I have been staying positive in regards to my health and truly know that I will defeat this. I will get my life back. I will be the mom and wife that my boys knew and deserve. Although, I will be new and improved.