April: My National Month and FND

April is my month. (Just Kidding) But seriously, not only is April National Poetry Month, it is also National Autism Month. I've talked about that before, since my daughter has Autism. I'm not going to write about that again, but feel free to browse through my blog and look at an older post about it. I don't drink much, but I know people who do and April is also Alcohol Awareness month 👀. I'm not going to say much about that, except that drinking to excess often is not the best of ideas. Now April brings another thing to our awareness that effects me personally: Functional Neurological Disorder, or FND.

https://unsplash.com/photos/a-no-standing-anytime-sign-in-front-of-a-body-of-water-bmDq1HYxyJg?utm_source=unsplash&utm_medium=referral&utm_content=creditShareLink

I thought the above sign was kind of funny because of the "no standing anytime". One of the symptoms of FND can be paralysis. It can last for a short period to indefinite amount of time. You do not have to have this to have FND. Often, and as is the case with me, you lose the ability to control one side of your body. Like a stroke, only the scans will come back saying it wasn't a stroke. I lost control of my right leg overnight, was able to use a walker next morning and a few weeks later was better. Unfortunately, I go through bouts of being better and worse. Some days I have to use my Walker, some days not. Fortunately, I've never been as bad as that first time. 

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There is so much to this disorder, the symptoms are a mile long, and you only need a few of any of them to have this ailment. I also have functional seizures, what used to be called pseudo seizures. There was a call for a name change because these seizures are real, they're just non epileptic. That means your EEG, like mine, will come back normal, but you'll still have seizures that can last for hours or longer. That was something unheard of when I was working with disabled students. 

I have this disability now, worked with the disabled population, and never heard of it. So, FND definitely needs some awareness. People can have MS and Parkinson's like symptoms, but their tests (like mine) will show they don't have those. IBS and Fibermyalgia are both common in people with FND, both of which I have. Also bladder problems...which I have. And hands and feet getting stuck in funny positions, that I have too. There are symptoms I don't have, like functional blindness where you can't open your eyes, or mutism where you can't talk, but I've got most of the FND symptoms. 

Brain Fog and Confusion are big symptoms too, and as in the case with me, this can come and go. You can have really good days and really awful days. Most of the time I'm good, but I've forgotten my zip code and the year until I have been told what they are. I got tested for Dementia too, with a Neuro Psyche Eval, which I do not have.

Found on Unsplash

Oh yes, and to continue with FND symptoms, hands and feet can go numb. Mine often do. I'm going to have an EMG on Thursday on my right leg. Whether that shows something or not, I have the numbness/tingling in all my hands and feet, so at least some of it is FND. You can see on tests what other neurological disorders are. Disorders like MS and Parkinson's and Epilesy. As of today, there really isn't a way to test for FND except through elimination. I have heard there's a leg test, but you would have to have the weak leg symptom for this to work on you. I do have this, but not everyone with FND does. I hear they are developing something called an fMRI that can scan for FND. That's just in the research phase right now though, and don't quote me on it. My neurologist diagnosed me after seeing a video of some of my jerking muscle movements.

Orange Ribbon for FND Awareness Found At: https://www.vecteezy.com/photo/71736544-orange-ribbon-symbol-against-mottled-beige-background-for-awareness-concept

Today, as I'm writing this, it is April 13th, National FND Day. It's probably after that as you're reading this, as it's late. But the whole month of April is FND Month, and I wanted to bring #FNDawareness. As you can see, this disorder is very hard to explain and people need to know about it. The only treatment that I've heard about is CBT (Cognitive Behavioral Therapy, a intense type of mental counseling), Physical Therapy, and Occupational Therapy. One fortunate thing is that FND is not fatal, but it is a B*tch to live with. I got a lot of my information from FND Hope, plus various places around the web. My insurance, Kaiser, also sent me informational papers on Functional Neurological Disorder. My FND App has some excellent links on it. I don't feel like I really scratched the surface in telling you about this disorder. I do feel like it is a good time to move on. So...

 

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I know it's poetry month and I wrote about something else. I did however, find and polish 2 poems I wanted to enter in the contest I was talking about in March. And I started a third poem to enter that's 3/4 written, so I am celebrating poetry this month. My Dad was also telling me to try to memorize some of my poems, or to at least recite some out loud. By the end of this month, and maybe as next months post, I'd like to make a YouTube video of me reciting Talking Walls. I hope to make more videos in this coming year 📹. Thanks for reading!