Detour
Taking a Detour
Have you ever been stuck in a traffic jam? Frustrating, isn’t it? You know where you want to go, but the road in front of you won’t let you get there. Sometimes that’s how my brain feels with FND. The harder I try to go the direct route, the more my body shuts down.
On the road, we sometimes have to take detours to get where we want to go. That’s how I’ve learned to think of the ways I “trick” my brain into doing what I want it to do. Just take a detour from the direct route.
For example, sometimes I get stuck on the floor and the harder I try to get up, the weaker my muscles feel. Instead of fighting it, I try to think about something else, maybe what I’m going to make for dinner later. While focusing on the details of dinner, I allow my brain to go into the “automatic” mode of getting up. No thinking about muscles, no thinking about weakness, no thinking about the HOW to get up, just a relaxed fluid motion my body has done a million times in the past.
This sort of brain fluke is one of the ways doctors can tell we have FND. When I have a neurological exam, my whole nervous system goes haywire because I am working so hard to perform a conscious, directed task under pressure. If I’m told to touch my nose, my arm goes ballistic, tremoring and going every direction except toward my nose. After I calm the unwanted movements down, a few minutes later the doctor may notice that I can scratch my nose with ease. Obviously my brain knows where my nose is and how to get there. It’s easy to see why some doctors think we are faking our symptoms. Physicians who understand FND recognize that there is something not quite right with the wiring in our brains and we are not producing these strange movements on purpose.
In the early days of my FND there were times when I would get exasperated with myself because I couldn’t understand why sometimes my muscles worked correctly and sometimes they didn’t. I doubted my sanity sometimes, because what I observed my body doing just didn’t make sense to me. I still don’t understand it most of the time, but I have learned to work around the problem.
The first time I was hospitalized for not being able to walk, the neurologist spoke in vague terms, not addressing the fact that he thought my symptoms were due to FND. He advised me to go home and just not think about my walking. I was livid! How could I not think about my walking? How was I supposed to go to work? I couldn’t even get myself to the bathroom!
In some ways, he was right. The more I focused on my impairment, the worse it became. It was infuriating hearing that from someone who could walk fine, who had no answers to why my mobility had disappeared or how to make it better. I hope that you will let me to make suggestions on ways to improve your function. I get it. I’ve been there. It’s confusing, aggravating, and devastating. But it can get better.
A few things to try-
- Bounce a large ball with each step while walking
- March in place watching yourself in a mirror.
- Walk backwards or sidestep
- Dance or march in place with music
What other ideas have helped your movements worked better? I’d love to share your suggestions!
Tell me more about how the mirror and treadmill worked. Was it quick like speaking was for you?
For me, the mirror helps my brain adapt almost immediately. That is only my experience though. We are all different. I would try it with the expectation that your brain will respond positively to the introduction of visual information, but if it doesn’t happen that way for you, I wouldn’t discount it. Give your brain time to adjust and use your encouraging thoughts to help drive the process. 😊
My feet get a glued to the floor feeling. Based on your mirror idea I’ve found looking at my feet unsticks them and works also on door way “freezing”. Thank you!! No amount of forcing or willing them to move worked. Xx
That’s fantastic, Louise! Like you, I’ve noticed that forcing the issue doesn’t work. I’m thrilled that you are figuring out things that work to get your brain “unstuck”!
To help lessen my unwanted head movements, I sometimes juggle 2 balls. I have become quite an expert! Also, looking down at my mobile phone or following the line of my floor tiles whilst walking can help to reset or get smoother overall movement for a time.
Lisa, that’s a great tip! I’m working on a blog post about the effect of attention on our involuntary movements. Distracting your brain to a different area of the body than the one that’s malfunctioning can really help.
I am still trying to figure out re-focusing from this unwanted face grimacing, nose scrunching, eye tightening. When i am still and at peace, or when crafting, sewing or writing, reading, the movement stops completely but when i am generally moving around, driving, doing housework, sport, especially when running the movement is constant. Any suggestions?
I’d be very interested in your involuntary movement blog Max. Thank you
Most of the techniques I’ve found helpful I’ve discovered through trial and error. In general, I’ve learned that it helps to direct my focus away from the symptom and pay attention to something else, as you’ve found when engaging in quiet activities. Have you tried something like listening to music or audiobooks to engage your mind when involuntary movements are a problem?
Best of luck as you explore ways to manage your symptoms!
Max
This site is truly amazing! Thank you so much for taking the time to provide this content. Personally, I was unwilling to accept this diagnosis and was shocked at the doctor’s nonchalant dismissal. Stunned at statements such as ” try not to think about it, or distract yourself”. Although, I did realize that does work as I’ve had unexplainable double vision and laryngospasms most of my life that most definitely worsened with stress and dissipated during eras of calm. Most recently, I’ve had trouble with my gait, spasms, jerks, twitching, and other upsetting symptoms and was definitively diagnosed with FND. Without being given much information, I was told it would improve when I learned to relax and keep my stress down. No one wants to hear that, as I think it makes us feel like we are causing it or are attention seekers. Which, in my case, as I’m sure most, I have always been the “go-to” person that never needed help but was always helping everyone else. For the first time, the information provided here provided me a sense of empowerment. Thank you!!!
Hi Holly,
Thanks so much for your comment. You’ve expressed perfectly why I started my blog. I felt as you did- dismissed, not taken seriously, and misunderstood. It’s really hard when you’re a competent, intelligent person to be handed this diagnosis with so little reasonable explanation, compassion, or respect. In truth, the diagnosis can be given in a way that makes sense to people, but that rarely happens. The more I understand the way the brain and nervous system work, the more I can accept the diagnosis in a way that preserves my self-respect. We have nothing to be ashamed of. We deserve competent care. Sadly, that is not widely available.
Wishing you the best on your journey,
Max