Updates and Answers

Posting here or any writing progress at all has been halting and slow for a few years now. I have been open about my frustration at the lack of answers to new, severe physical and mental symptoms over those same years. I was diagnosed with autism, Chiari I Malformation, and Ehlers-Danlos Syndrome (EDS). Those diagnoses provided answers to several issues I have experienced my whole life. Still, they could not explain why I kept having what looked like myoclonus and dystonia episodes, involuntary movements or muscle contractions that pull you into odd postures, and cognitive impairments that seemed like the early stages of dementia with increasing frequency over the past decade.

I bounced between various neurologists, therapists, and a rheumatologist for almost three years now in search of answers until I was finally referred to the Movement Disorders Clinic at UAB last month. The neurologist I saw there reviewed all the imaging and tests run over the past few years, ran a few tests of her own, asked a series of questions, and finally diagnosed me with Functional Neurological Disorder (FND).

For more information on FND, visit the site my rheumatologist recommended: https://www.neurosymptoms.org/en/.

FND is one of those conditions that is poorly known, often misunderstood, and difficult to diagnose because, while the symptoms are very real, involuntary, and debilitating, the cause does not show up on the typical scans. Most doctors will request an MRI or even an MRI with contrast, but since FND is a product of how the nervous system functions rather than an abnormality in its structure, these tests come back normal. It takes two fMRI scans (Functional MRI), one taken when symptoms are present and another when they are not, but the patient mimics them, for the source of the issues to actually show up on imaging.

This type of testing is a relatively new technology, so it is not available everywhere and is rarely done. This fact explains why FND is so poorly known and misunderstood. Clinical testing has only recently proven the actual cause of the symptoms.

Unfortunately, despite the assurances I received that it is curable when diagnosed, few are trained to treat FND, and not all symptoms have reliable treatments. Symptoms of irregular movements, such as those mimicking epilepsy, Parkinsonism, myoclonus, and dystonia, are those most successfully treated with a combination of cognitive and physical therapy. Considering the neurologist who diagnosed me worked for the Movement Disorders Clinic, I am sure those are the symptoms she is most concerned with treating, so her outlook is understandable. 

Still, real-life testimonials make it clear improvements are more FND going into remission rather than being cured. Relapses are common enough they should be expected from time to time. 

While the physical symptoms are my most noticeable ones and have been extremely painful at times, they were not the ones causing me the most problems. It's true I need a cane often enough to keep one close to hand. I don’t trust myself to use a knife in the kitchen anymore, and we've replaced our china with dishwasher and microwave-safe plastic dishes because of frequent accidents. However, my family can help me with physical tasks. They can’t assist me in thinking.

Difficulty recalling certain words or sometimes whole chunks of my vocabulary was one of the first cognitive symptoms of FND I began to experience a decade or so back. Then I started noticing more holes in my memory than I’ve always experienced due to ADHD's effect on memory encoding. Instances of severe brain fog and confusion began to manifest in late 2018.

The neurologist at UAB referred me to a couple of psychiatrists specially trained to treat FND. It's a problem with the function of neural pathways rather than their structure, after all, and cognitive behavioral therapy is the top method of retraining cognitive function available today. I called to set up an appointment naively sure it would be similar to setting up an appointment with any other specialist. It might take several months, but I would eventually be able to get one.

I failed to realize there are so few trained to treat FND that those available must be selective in who they treat, and my physical symptoms are far milder than most who seek treatment. Several weeks later, I am sure I am low in the triage queue if not removed from consideration altogether.

So, since my searches for other professionals who can treat it within a reasonable travel radius turned up no one, I began researching what has helped others with FND to try and take a self-help approach. I have had some success with the techniques for the physical symptoms, but the few stories of those with cognitive symptoms left me stunned.

There really are no stories of recovery from cognitive symptoms. The best ones celebrate preventing the worsening of those already present. The only advice seems to be to make peace with them, manage your stress, avoid overexertion, and try your best not to worry about them since prolonged stress and focusing on them causes them to worsen.

It was a bitter pill to swallow.

I lost an administrative position due to the communication issues that come with autism and for daring to ask for the simple accommodation of written instructions to try and correct this. I switched to working as a freelance writer and lost my largest regular customers because persistent brain fog made it impossible to keep up with their required weekly word counts.

I have been unable to earn an income from anything other than residual sales since early 2021 due to physical and cognitive symptoms of FND.

I continue to try and write, but the days I have the energy and focus needed after finishing homeschooling are few and far between. According to the stats provided by Grammarly, I still write anywhere from 3000 - 6000 words a week, but they are not words written for stories or articles. The vast majority of these are in lessons created for the kids’ schooling, messages between us because typing what we want to say is often far easier than speaking, or using text to communicate during nonspeaking episodes.

I add to stories or the occasional article when I have good days. Sometimes I only manage a paragraph. Sometimes I have a really good day, and I manage to write four or five.
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You can write whole novels in hundred-word chunks, but it takes months if not years to do so.

So that's where I stand. There are so many stories I want to tell. But translating thoughts into words is becoming more and more difficult, and it seems there’s nothing I can do to change that. The more I try to brute force my way through brain fog or vocabulary blocks, the more instances of truly nonverbal spells, where I still have complex thoughts but cannot translate them into words, occur. Even doing everything advised to help, there’s only so much I can do in a day. I suppose I must make peace with being a turtle writer in the extreme for the entirety of my career if it can be called that.

I may take to publishing short stories or collections of short works here and there between the novels. I have a couple I am chipping away at now when I feel able to write but too foggy to keep track of more than one plotline. Articles are needed for the sake of SEO and to help new readers find what work I complete, but researching and synthesizing what I find into original content takes as much focus as weaving several storylines together.

In short, I will try to provide semi-regular content for you all, but I can make no promises on the frequency it will be delivered. I hope you can understand.