Jacquie Tang from Sydney Australia sent me this video describing how she developed a functional gait disorder and how she used movement retraining techniques to improve.
Jacquie sent me this additional information about her story that might be helpful to users of the site.
I was diagnosed with FND (functional neurological disorder) in September of 2023 and my immediate response was relief as it wasn’t something more serious like Parkinson’s Disease. Despite having a name for my condition, I still felt hopeless as no solution was provided by my neurologist on how to treat my FND. A friend of mine suggested I try distraction activities such as an obstacle course or tossing a ball. This worked to some extent but in the end, I saw a neurological physio who provided me with a toolbox to help manage my symptoms. However, most of the techniques I have found useful have been through my own self-discovery and finding creative ways to deal with this naughty child which I have named Funky Nellie Delta. Like a naughty child, she will play up if I pay too much attention to her, if I am physically or mentally tired or overstimulated. Before FND I could do multiple activities in a day but since FND I tire more easily and can only do a few things. I have learnt the key to managing my symptoms and energy levels is to balance my day by including restful activities such as napping, meditating, yoga, acupuncture pottery or drawing. All of these activities help calm my nervous system and reset it so it does not become overloaded. If I do an activity that is quite tiring the biggest thing that has helped is to rest after that activity. By resting my depleted battery it has a chance to recharge. I have learnt that if you push the body either mentally or physically beyond its limits it can cause adversities. As my acupuncture says “Your issues are in your tissues”
Helpful tools that worked for me
A lot of what works is individualised and it is an experimental process where different things work for some and not others. It is a bit of trial and error. For example when I am in the kitchen sometimes my leg would lock as I stopped. I started to use my hand like it was as brake and this helps.
How I manage flare ups and relapses
FND is now more in the background and I am constantly improving as the neurological pathways reconnect. The key thing I have learnt, is it takes time and does not happen instantly. I occasionally still get flare up and this usually occurs if I have a physical injury to my body.
To manage flare-ups I keep a diary and write down what has worked for me in the past and refer back to this. I remind myself that FND isn’t getting worse and I haven’t done any damages, this is just a temporary thing and things will get better.
As much as I would prefer not to live with FND I have learnt so much about this disorder and the world of FND is no longer a stranger to me. I have the tools to deal with her strange behaviours and symptoms. As a friend said to me “ in a way FND has enhanced your life, as it has had you focus on living.” And that it has, there is no stopping me. Recently, I started indoor rock climbing and what a distractor! My best friend gave me a bracelet, which is my new motto: “She believed she could so she did.”
The sky’s the limit if : you can get the right help, find tools that work and most of all understand and accept the diagnosis.
Jacquie also shared this update with me three years after the onset of her illness which gives an insight in to how things can change over time.
Three years later
It is almost been three years since FND (Funky Nellie Delta) came into my life and although she has not completely gone I do feel I am better equipped to deal with her and the symptoms I experience.
FND has been an ongoing learning experience for me and I realised that Funky Nellie Delta is not the enemy but in fact a friend trying to protect me. As my acupuncturist always says, “the body is always trying to keep us safe, the way it does this is through signals. If we are not paying attention or used to operating in a high stress mode we can easily miss the signals. Then the body shouts louder and sends stronger signals until we take notice.”
For me, work related stress manifested itself in stomach issues. Then when I suddenly developed gait issues it was my body’s way of shouting louder and I had no choice but to pay attention. My gait abnormalities became even more pronounced and walking became quite difficult. Even my balance was affected to the point where I had trouble standing in a queue. I felt like me and my body were two separate entities. As a result, I lost trust in what I could do physically and hence did less and less.
FND is a strange disorder because when I think she has left my life she will suddenly reappear. This is usually because I have done too much, being over stimulated, being over tired or even dehydrated. Funky Nelta Delta is just trying to look out for me by saying “you need to slow down, rest and reset.”
Reoccurrence of symptoms can be distressing and deep down inside there is the fear that my FND will return or get worse. Sometimes I am afraid that I will go back to that very dark space I was in. When I didn’t know what was causing my strange body movements, I became stressed, depressed and at times suicidal. I have since learnt that FND feeds on these negative emotions and then the symptoms can get worse.
When the symptoms disappear you tend to forget what worked in the past. So I find that keeping a diary is helpful with FND symptoms and solutions. Getting creative with a solution and turning a symptom it into a challenge has also worked. For example, in a crowded street market I was getting anxious and having trouble moving forward. I turned the people into rock climbing holds and the market itself into a wall that I had to work through and solve. This made walking in a crowd easier and it ended up being fun.
When I do get relapses, I have to remind myself that they are temporary and I haven’t done any damage. Instead I have to acknowledge that I have done too much and haven’t balanced my day with restful activities. Restful activities for me include: positive affirmations, journalising, drawing, pottery, meditating and acupuncture all of which help to calm my nervous system.
An integral part of my recovery has been indoor rock climbing. It has helped me significantly by improving my balance, coordination, strength, cognitive function, and special awareness. It has been an effective proprioception activity as the climbing movements are automatic and a subconscious process.
I look at the wall and see it as a puzzle and the movements become automatic. My rock climbing instructor has taught me to move my body in ways I never thought possible. This in turn has lead me to regain trust in my body and its capabilities. In fact, I no longer feel that my body and me are separate entities but in fact one.
Although things are getting better, I do sometimes get down as I can’t do as much as I could pre FND days. Instead I have to look at the positive aspects and look at how far I have come. As my best friend tells me “always live life on the flip side and always find the silver lining. “ I realise that before FND I was constantly on the go and my body never got a chance to recuperate and rest. I feel that FND has taught me to live a more balanced and meaningful life.
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