How I got into helping people with dystonia and FND
It started some years ago with a conversation.
I was introduced to consultant neurologist, Dr Marie-Helene Marion and we got chatting.
Marie-Helene is a neurologist of vast experience, very well known for her work with people experiencing movement disorders, the treatment of dystonia with botox, and founder of the British Neurotoxin Network (BNN).
Marie-Helene thought I was talking about dystonia.
I thought Marie-Helene was talking about chronic pain.
So many common features.
For instance (in no particular order):
- Chronic pain and dystonia are both embodied
- They are embedded within the person’s society and culture — a context and an environment
- Beliefs shape experiences
- Thoughts are enacted
- Emotional state is a part of the experience of pain and dystonia
- Both change and can get better
- Getting better is an active process
- Actions (movements), thinking and perceptions come together as a lived experience
What should we do?
It seemed obvious that we could do some useful work together.
Marie-Helene, with her vast experience of diagnosing and treating dystonia.
Me, with my range of skills, practices and strategies to share.
The combination would give people a tangible way forward.
Botox treatment and medication, together with an active approach: ie/ new daily habits, sensorimotor training, ways to deal with tricky moments, new perspectives, skills of being well, and those to live well (reconnect with what matters in different ways).
And that was the key. The togetherness. A collaboration between us and the patient (person).
Traditional thinking (meaning sticky, outdated, based on old ideas) said ‘physio’ does not help dystonia.
But this was not typical physio.
For dystonia, FND or chronic pain (some people have movement disorder and pain).
Far from it.
So we did it
It must be over 12 years we have worked together.
Cervical dystonia, blepharospasm, Meige Syndrome, facial, mouth, tongue, jaw, voice, hand, FND, leg, foot (read about the types here).
In this time I have met consultants and therapists who inject botox at conferences, meetings and through the BNN. Marie-Helene would enthusiastically introduce me as her physio 😊.
There are not so many who provide coaching and training for people — this needs to change. As with chronic pain, there is a lack of specialists.
People need an early diagnosis and then to get into their training, interwoven into daily living, often with botox treatment.
One of the aims was to gap out the botox injections.
The usual time between is three months, give or take a few days.
Some people believe that this is the only pattern.
But instead of this, we sought to extend the time, working with the person.
Part of this was to view the time towards the end of the three months and beyond as an experiment: how can I do this in the best way?
With deeper knowledge of the experience and skills being practiced each day, the person takes a different perspective. They start shifting their expectations, which play a part in all our experiences.
The expectation effect
A powerful effect is increasingly understood when it comes to our experiences and perceptions.
The expectation effect.
We experience what we expect to experience of the world and ourselves.
Predictions about ourselves and the world roll out as our reality.
Part of the problem then, can be expectations that things will be the same.
Insight: nothing can ever be the same. No moment is ever the same; aka impermanence.
Mostly these expectations are subconscious, where body systems have learned through prior experiences.
Updating these beliefs and installing better ones is part of making things better. To do this means jostling a system that has become sticky–beliefs insulated.
Bringing flexibility back into the system (being open to possibility–there are different ways to do this including a change in overall approach, closer examination of experience, challenging thoughts/beliefs, sets the scene for such updates.
This top down work is done together with bottom up training (eg/ sensorimotor training, activity experimentation, reconnection).
Maybe the botox acts in part by jostling? Creating some manoeuvrability in the system for updates that the person then harnesses with their daily practice, forming new predictions and expectations.
The model I have very briefly described here is that of predictive processing (PP). PP describes how the brain makes predictions about the causes of sensory information, thereby generating experiences top-down. This is instead of the brain passively receiving information from the body and the world, and then making sense of it.
Clearly we are more than a brain. We have a body that is a large part of our experience of the world, and the state of which plays a significant role in how we think and feel.
In terms of dystonia and FND, the involuntary movements shape a different world and sense of self. We experience a world in part determined by how we are able to act in and upon it. Our perceptions are being shaped by our thinking and our actions. Wearing slippery shoes makes slopes look steeper for instance.
Knowing this helps us to create comprehensive and bespoke ways forward: including (1) understanding the condition, clear thinking and focus (2) specific training to improve precision and control of movement (3) skills/practices to deal with influencing factors (eg/ stress, tension, sleep disturbance) (4) reconnect with meaningful activities (how to do this).
PP is a useful lens to look through, as is enactivism. They allow us to understand the lived experience of the person and what can be seen and measured. Bringing these together is essential so we can make sense of what is happening for the person. Then, a programme can be put together including injections, medication and training to be on a path to a better life.
This is the way I see things continuing to progress. Part of my role is to share these ideas and collaborate further as we seek to help people in better ways.
For more, explore the rest of my site and to gain insights into the PP model, listen to Dr Mark Miller and Andy Clark.