Crossing Paths with Functional Neurological Disorder (FND)

It was one of those surprisingly balmy winter days. The sun was pleasant on the skin, coming at me with just the right temperature while a gentle, warmish breeze coaxed the sunrays to move over my skin. I love to take evening walks in La Pinède (a pine grove in my backyard) and this walk was particularly pleasant. It usually relaxes me in both body and mind. (In the next post I will expand a little more about La Pinède and its influence on my journey).

La Pinède as the afternoon winter sun casts long. delightful. diagonal shadows

A while later as I sat in my kitchen, having just started cooking dinner, I had a sudden thought and jumped up to do something. What happened after that was a blur. I remember standing in front of the stove and feeling like I was losing my balance and there was nothing to do to stop this fall, except to go forward towards the cooking pot on the stove. I fell on my back instead. It was incredibly sore and I lay there for a few minutes, trying to make sense of what just happened. Then I gently started moving parts of my body to see if I could possibly get up. I managed to do that in a gingerly way (years of doing yoga must have helped, I’m sure). I was in much pain but fairly functional. 

Since I could carry on with most of my daily routine activities, I initially thought I must have bruised my spine and evidently developed protective muscle spasm. However, as the muscle guarding gradually dialled down, and more freedom of movement was permitted by my body, I started to notice subtle changes in my walking pattern affecting my left foot. Barely noticeable at first, then gradually more intrusive. X-ray studies revealed a compression fracture of L3 vertebra in my lower back with a subsequent rotoscoliosis (curve and rotation in the spine) with apex on the level just above where the fracture occurred. I lost 40% of height in that vertebra towards the left side of its body, which is substantial. Unbeknownst to me at the time, the fall on my back had set the machinations in motion for me to come face to face with FND and all that it entails. 

Understanding Functional Neurological Disorder

Functional Neurological Disorder is a condition where the brain and body do not communicate properly, leading to a range of neurological symptoms. These can include:

• Seizures: Non-epileptic seizures that can mimic epilepsy.

• Movement Disorders: Such as tremors or difficulty walking.

• Sensory Symptoms: Including numbness or tingling.

• Cognitive Issues: Such as memory problems or difficulty concentrating.

  
  

The symptoms can vary widely from person to person, making it challenging to find a one-size-fits-all treatment as FND can affect the nervous system in different ways. Some people experience movement-related symptoms, such as weakness, abnormal movements, tremor, spasms or difficulties with walking. Others may have sensory symptoms, including altered sensation, numbness or changes in vision or hearing. FND can also involve episodes resembling seizures, known as functional seizures, or affect speech, swallowing or other neurological functions.

These symptoms are real and involuntary. FND is not someone imagining their symptoms or simply being unable to cope with stress. Rather, there is a problem with how the brain is communicating with the body, even though the nervous system itself appears structurally intact on routine investigations. Jon Stone uses the analogy of a computer system to describe FND: the hardware is functioning well (i.e. normal brain scans, no physical or structural damage in the brain), but the software has a glitch.

For me, FND has taken a motor form, affecting the way I move and, most noticeably, the way I walk.

My walking disturbance developed gradually after my fall and spinal injury. At first, the changes were subtle enough that I could explain them away. Over time, however, my left leg began to behave very differently when I walked. The movement felt like an effort and strangely unfamiliar, almost as though I have to consciously work out something that was once happening automatically.

One of the most interesting (and frustrating) aspects has been that my walking is not the same in every situation. The environment, the surface I am walking on, how much attention I am paying to my movement and how fatigued I am can all influence what happens. There are times when walking feels surprisingly natural, while at other times my left leg can become stiff and awkward, and yet other times when a foot-drop pattern emerges.

And perhaps that is one of the hardest things about FND to explain to someone who has never experienced it: the fact that I can sometimes walk relatively normally does not mean the problem isn't real. Variability is part of the condition.

Recommended Resources:

• Neurosymptoms.org

• fndsociety.org

• fndhope.org