The dystonia coaching programme that I have developed over the past few years is based on similar thinking to that of persisting and complex pain. In fact, the reason why I started working with people experiencing dystonia is because of a conversation with Dr Marie-Helene Marion (the movement disorder specialist).
We were discussing biology, people and influences, thinking that we were talking about the same thing, but in fact I was talking about persisting pain and Dr Marion was talking about dystonia! From thereon it was clear that there are significant parallels in what we see and who we see, leading to an innovative approach based on the latest neurosciences. I was fortunate enough to talk about this at The Dystonia Society meeting and The British Neurotoxin Network conference.
Most cases of dystonia that I see are cervical. This is a troubling condition in many ways, including the social aspect that is commonly forgotten. By this I mean how dystonia impacts upon the person’s social interactions due to the way it can make them feel about themselves. This is such an important part of the problem, as the way we think and feel affects our sense of self and how we move. With a movement disorder, this is highly pertinent. Our thoughts and feelings can frequently be impacted upon by the way we think others see us, potentially driving behaviours such as avoidance and protective posturing, both of which affect quality of life.
There are several other notable consistent findings. An altered sense of body position that underpins the imprecision of knowing where your body is in space and the movement imprecision that is the classic sign. In fact, it is the sensorimotor function that is a problem as a whole, influenced by a range of factors such as thoughts, emotions, the environment. As with pain, dystonia is a whole person problem and as such requires whole person thinking behind the treatment and training programme.
Botox treatment often has good effects when used at the right dosages. Commonly people become engrained in thinking that they must have injections every 3 months, with this expectation influencing behaviours and outcomes. In my dystonia programme we immediately aim to develop this thinking into how we can gap out the need with specific training but also challenging unwarranted expectations. It is exciting to think that drugs are affected by the way we think as it opens the door to great possibilities.
Much like the Pain Coach Programme for persisting pain, the dystonia programme targets the person: their thinking, emotions, movements, sensations as a whole. There are specific training exercises that take advantage of our ability to develop (commonly called neuroplasticity) and learn, and a range of strategies that target the influences upon the way we move and face the world including stress, anxiety, thoughts, other people and the environment. Our understanding of ‘how we work’ is ever-growing and this is cause for great optimism as we see people overcome chronic pain and dystonia in theor own individual way.
For more details or to book an appointment, call now 07518 445493