Physiotherapy Dystonia Network Meeting

Last week was the Physiotherapy Dystonia Network Meeting in Birmingham, attended by physiotherapists who work with people suffering dystonia who wish to engage in conversations to further our understanding and impact upon this condition. Chaired by Dr Marie-Helene Marion, it was a day of engaging conversations, led by pertinent, short talks that shared knowledge and experience. One aim is to develop the network, which would further the awareness of dystonia and create opportunities for clinicians to build their skills and knowledge together.

I was asked to talk about my approach to cervical dystonia (see my slides here: http://www.slideshare.net/RichmondStaceMCSPMSc/physiotherapy-dystonia-network-meeting-11th-march-2016). Similar to the way in which I approach persistent pain, the programme is neuroscience-based coaching and treatment for cervical dystonia.

Beginning with how Dr Marion and I met, and how we shared stories of chronic pain and dystonia before realising that there was significant overlap in the characteristics and hence approach that could be taken, I then provided some background as to why I do what I do with people suffering cervical dystonia. I emphasised the over-arching need to consider the whole-person, their story and how their narrative fits within their life as a lived experience.

Cervical dystonia is a condition that sits at the root of the sense of self. We face the world with our bodies and the way in which we move, posture and gesture communicates with others. Yet this moving and posturing is affected by the way we feel, where we are, who we are with, what we have been doing, what we may do in the future moments (and we may not be aware of what that will be in any given environment), and hence the final product of movement is the brain’s best guess as to what we should be doing in the light of the current evidence, based on past experience. And the brain does not always get it right! Of course we are not separate from our brain; we are our brain, our body, our mind and our reality as created by the sum of these within a particular environment.

Despite this seeming complexity and perhaps departure from the classic model of mind-body separation, a moment’s thought and we soon realise with some simple examples that embodied cognition is a useful way of thinking about the way we exist. Where do you feel anxious? Usually in your abdomen or chest although anxiety would be considered a ‘mental’ experience. Trying to separate body and mind does no justice to our lived experience and reduces the impact of any treatment programme.

Having briefly covered this, I described some of the training methods that include motor imagery, visualisation, sensory discrimination training, proprioception and motor training. None of these are discreet but instead are moulded together in the form of a comprehensive programme to create new learning experiences towards a more normally functioning sensorimotor system, but remembering that this ‘system’ works closely with emotional, attentional and motivational areas of the brain, that is of course part of the whole person, residing within their reality and perception of life to date. Nothing happens in isolation. We seek to restore a sense of self; who we feel we should be.

My talk was brief and hence only able to scrath the surface of some important considerations, especially the need to set the scene for training by helping the person develop their thinking and self-coaching skills. The aim now is to expand this talk into a day long learning experience that looks at each area and how they tie together into an approach. Keep an eye on the website and twitter for updates (@painphysio). There will also be a series of blogs, considering some of the key issues in cervical dystonia to follow.

If you would like any further information, please do get in touch: 07518 445493

Useful links:

The British Neurotoxin Network

The Dystonia Society

 

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