(March 2019)
In home therapy started and honestly they just don’t understand what to do with me and even know anything about my disorder. When I have tremors, they want me to just rest. Lucky for them, I never had a seizure during a session or that really would’ve really freaked them out. Occupational Therapy and Physical Therapy only is coming for 2 weeks, because I was going to be finally getting admitted for my week long video EEG soon. After I’m discharged I will start outpatient therapy back at Kessler Rehab where they better understand FND and how to handle me during my symptoms. This EEG will determine for sure if 1- I have Functional Neurological Disorder (FND) as they believe and 2- if my seizures are epileptic or non-epileptic and which part of the brain the seizure is occurring in. This was a huge test that I have been waiting months for and it’s finally getting closer. But first I have to get through some therapy at home. In the house, we worked on climbing the steps independently, or making a simple snack when using a walker. But, as soon as tremors would start, I would get more off balanced and they would feel sorry for me. I don’t want people to feel pity for me, I want them to help me. I know I’m young, I know I’m not one of their typical patients, but I still need their help. I need to work through my ticks and balance issues, not sit and avoid the activity.
With FND, your wiring to your brain is off and it misfires. This makes your body move in ways that you don’t intend to move or to respond to stimuli differently because your body is fighting against that fight or flight response. During therapy or even my off days, I have had some interesting ways of walking. I wanted to share some with you, although not all of them are taken in March. There have been so many different types of styles and some of the time I’m able to walk independently. Each time that I would have a seizure, that would set me back physically and then I would require the wheelchair, walker or a cane again. Even my tremors would often trigger a seizure if they got intense enough by putting my body into that fight or flight mode. I just didn’t know how at the time to get my body to calm down and relax. My tremors or gait issues would happen out of the blue or would begin while I’m standing at the counter making a sandwich. I would feel my legs begin to move, then my head. I would try to walk to my room holding onto things if I wasn’t using the walker any longer and didn’t have my cane. No matter how I walk, I always wanted to try or be as independent as possible. I’m young, I was overall healthy, and I have two boys that want to play with me. Getting praise and encouragement from my boys for walking well is the best thing to hear. I want my family to see me and be proud of my accomplishments and not sad when things go wrong or that I missed out on another event or wasn’t up to playing a game with them that day, because I feel that pain daily. I want them to love me for me and I feel so loved by my boys and husband. They are my rock! They keep me moving forward. Even on days when I’m feeling down, they always can bring a smile to my face.
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