Learning from People Living with Parkinson’s Disease: Ten tips from the field
A newsletter to help you stay connected to Alexander Technique related research.
The ASO Newsletter - 4th Edition
Thank you for being here and for your interest in research on the Alexander Technique and its teaching.
In this 4th edition of the ASO newsletter, we have another piece written specifically for the ASO Community, this time by Glenna Batson ScD, PT, MA, mAmSAT, ISATT. In the post below, Glenna shares her experiences of working with people living with Parkinson’s disease, taking us through her initial trepidation and how she found her way. She offers tips for teachers working with people living with Parkinson’s that arose from applying her knowledge and experience from her own research background and from working with people with various neurological challenges.
This is the first ASO blog post about how Alexander Technique lessons can help people living with Parkinson’s, and we will be picking up this theme again in the future. Glenna acknowledges the work of The Poise Project, and we are excited to say that we will hear more about this innovative project later this year.
Learning from People Living with Parkinson’s Disease: Ten tips from the field
ASO Invited Blog Post -
Glenna Batson, mAmSAT, ISATT
In early 2019, The Poise Project (www.thepoiseproject.org) offered me the chance to train in their programme for teaching the Alexander technique (AT) to specific populations – in this case, people living with Parkinson’s disease (PlwPD) and their carers (care partners). Since inception (barely five years ago), the Poise Project has brought global visibility to the AT through research and training. The Poise Project will be the subject of future ASO blogs later this year. While the thought of leading a group of people in this demographic was exciting, I also felt a good deal of apprehension. I had qualified many decades ago as a physical therapist (1983) and as an AT teacher (1989). I also had six years (2009-2015) of research on improvisational dance and Parkinson’s under my belt (Batson et al 2016; Batson et al, 2014). Yet, I felt out of my comfort zone. I was well aware of the stumbling blocks in delivering practice-based content to groups of people with individualised needs. Many barriers to participation existed – and still exist. Back in 2009, for instance, ‘dance for Parkinson’s’1 was virtually unknown – as were many other complementary approaches. To recruit a respectable number of people to participate in my first study, I had to drive over 200 miles away from home.
Today, however, this no longer is the case. PlwPD have an array of options for promoting health and well-being, but the AT remains a relative newcomer in the mix. So, when the offer came from the Poise Project, I jumped at the opportunity -- despite my misgivings.
What I share here are not the details of what I learned from The Poise Project training, but rather some fundamentals I have gathered all along the way from my clinical research and from working with clients with neurological challenges. These interchanges shaped my teaching in large part, and I am happy to pass them on.
To situate the context of the usefulness of the AT for PlwPd, I draw from British social theorist Dr. Nikolas Rose. In 2007, Rose published a book entitled: The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Trained in biology, psychiatry, and social science, Rose predicted certain effects scientific and medical advances would have on society – advances such as genetic engineering and psychopharmacology that continue to shape 21st century health perceptions and practices in stunning ways. Overall, people are able to live longer with chronic illnesses and with the possibility for better quality of life. Rose laid out what he called: “a politics of life itself” – where, he believes, people are exhibiting a growing capacity “to control, manage, engineer, reshape, and modulate” health (Rose 2007, p. 3). We are, Rose claims, “somatic individuals whose “corporeality” (what constitutes our lived and living embodiment) takes center stage in health responsibility and choice. In this vein, Rose speaks of “the rise of multiple subprofessions” whose role is to advise, guide, care for and support, the public in their efforts towards a healthy (self-actualising) life (Rose 2007, p.28). These subprofessions consist of people who can work alongside of the beleaguered healthcare system and thus, are instrumental in promoting something essential that is ordinarily not part of routine medical care: mindful self-care in everyday living.
Enter the Alexander technique. Today, teachers of the AT have been welcomed into many societal sectors to share their somatic expertise. Our work offers a unique method of transforming mere coping and compensation into deeply rooted behavioural changes – changes made possible through practical, functional thinking in activity.
As I noted, a vast array of non-pharmacological and complementary options is now available to PlwPd. While there remains no cure for this disease, people are living productive lives, thanks in part to an increasing investment in self-care. For AT teachers, we fit comfortably into this healthcare niche without sacrificing our principles. Means whereby, inhibition and direction can provide and reinforce stability within mobility, keeping mental and physical health poised and balanced on the go - regardless of age, stage and condition.
Nearly 20 years have passed since the publication of the first research article on the effects of AT on this population (a Randomised Controlled study by Stallibrass, et al, 2002). Since then, the body of scientific evidence is robust on the effectiveness of mindful approaches to maintaining psychophysical health. Also, at the consumer level, national and local (disease-specific) foundations have become essential resources for providing information on functional independence and quality of life. For instance, the Parkinson’s Foundations in the USA and UK2 have touted the value of many methods on their websites and regularly report on research updates. As well, they list important tips for reducing the burden of care.
When invited to write this blog, I asked myself whether it would be useful to back up a moment (‘back-back’) and look at some ways of customising a general approach to teaching. While not going into a lengthy discussion of ‘normal’ movement, suffice to say that what most people call ‘normal’ (and what they seek and want) is the ability to stop-go and change directions at will, while maintaining balance, and adequate effort, timing and sequencing for the task at hand. These features may not be possible for a person with a neurodegenerative disease such as Parkinson’s. Therefore, it is important to recognize other areas where AT can be helpful rather than end-gaining towards ‘normalcy.’ While we do help people become more comfortable in daily activities, what we teach is not tethered to a particular style, level of skill, or aesthetic. Above all, what we are giving back to people, is a sense of belonging to themselves.
Parkinson’s is a full-blown attack on embodiment. Embodiment is not a noun, but a verb – an existential act of agency. Through being embodied (i.e., through our sense of ourselves in stillness and movement), we are able to act on our own behalf, identify and meet our own needs – with ease, spontaneity, and automaticity (Batson et al 2016; Himberg et al 2018). Further, a sense of embodiment is fundamental to our sense of intimacy. This palpable intimacy that we have with our bodies provides us with a sense of safety, ease, comfort, pleasure, and a host of other kin-aesthetic senses that are signs of belonging to ourselves and the world. Parkinson’s disease gradually robs a person of agency and kinesthetic intimacy. Spontaneous emotional and physical expression gradually are lost.
FM Alexander was so prescient in understanding that sensation alone is not ‘trustworthy’ enough to render good coordination (use). With Parkinson’s, however, the fact is that people progressively lose their proprioceptive/kinesthetic sense of who, what, where and how to navigate in the world. Consequently, fear and startle more readily surface in the foreground of the simplest of activities. When first confronted with someone with this diagnosis (as well as with their carer/care partner), the profile of needs can be daunting. Many questions arise for teachers: Where to begin? What role should sensory appreciation play? How much hands-on is necessary? How should I pace my hands and verbal cues? AT teachers clearly are sophisticated in their personal use and have a rich set of tools to help. What I share here is 10 tips that I learned from my own experience over these years – tips that I found invaluable in establishing the initial contact with a PlwPD. They have been essential in keeping me practicing the principles while I suspend endgaining into activity.
1. We are all on the same spectrum
FM Alexander had plenty to say about how our attempts to move (to organise ourselves for activity) are fraught with errors of thought and needless (inappropriate) effort. Despite all our knowledge about human movement science and our goal-directed intent, and our know how on getting things done, his words still ring true today. All of us, at some point in our lives, face some situation in which we are at a loss for what to do and how to do it. We’ve all been confused and confounded by some action that we simply can’t complete with ease and agility – a fact that tends to increase with aging or disability. Can you recall the state of embodiment in these moments of confusion – those classic hallmarks of distress in the face of not knowing what to do: freeze, shorten and narrow your stature, appear awkward, lose the correct timing and sequencing of action? If your answer is yes, you have enough insight into the life of someone living with Parkinson’s. You can empathise with the fact that they face this loss of automaticity and spontaneity alone, daily, and often moment by moment.
2. Coming into partnership
We are looking to build a resonant relationship, one where our own ease and non-endgaining is palpable, transmissible. To say that the relationship needs to be interpersonal, interactive and generative, hinges on the teacher’s empathic communication. As we touch another –with our words first - we are touched back. Our touch, our words, our actions – all resonate with the dissolution of goals in favor of process. How did this person come to you? How are you (and the technique) perceived? What do these people think/know about the AT? What do they think they are ‘getting’? In answering each of these simple questions, empathic resonance more readily creates a safe alliance with the client, empowering them in the mutual shaping of the lesson.
3. Safety first
Inhibit any assumptions you have about what they can and cannot do. Avoid jumping quickly into activities. Safety first: What frightens them? What gives them pleasure and ease? What remains difficult. These are often intertwined: functional activities like rolling to get out of bed, changing direction while walking, or crossing a threshold (over a step, through a door). You can be so helpful by listening longer than you would with someone whose nervous system is more intact and narrowing the activity choices.
4. Your most important principle - Inhibition
You are not there to ‘normalise’ their movement. You are there to support psychophysical agency and self-reliance. You help the client turn ‘I can’t’ into ‘I can.’ Here, you use your skills to provide alternative routes to achieve the desired goal, inhibiting over-doing and providing quality of movement all along the way.
5. More Inhibition
Restrain from starting with hands-on. Or, refrain from excessive touch, unless you have mutually agreed to offer a table lesson (for example, if pain is always experienced in standing). See how much you can impart by explanations, diagrams and self-exploratory practice.
6. Grounding
Note that sometimes PlwPd appear ‘weightless’ – a testimony to the internal struggle to find proprioceptive feedback and worldly connection through kinesthetic awareness. Therefore, start with locating body parts and how they are connected to gravity. Ground first, rather than go for lengthening and expansion (for example, placing and sensing one’s feet on the ground with hands placed on the thighs in sitting).
7. Pacing
When you do transition to hands-on, go slow…and even more slowly. You don’t need to slow the pace of your speech, but you do need to pause longer for a cue to register. Many PlwPD experience ‘bradyphrenia,’ a slower rate of brain processing and thus, slower to integrate, think, process, plan. Once you see your client can move faster, then go ahead with a faster pace. It’s vital to focus on moving at a functional pace and to perturb balance – i.e., events that happen in normal life all the time! However, it’s good to keep the distinction between ‘fast’ and ‘hurried’ in mind, as stimulus overload can lead to freezing.
8. Simple Language
Have them describe their own experience as much as possible and avoid jargon. Words commonly used in our work like head-neck-back relationship or primary control, will seem foreign and may be alienating.
9. Feedback
Please avoid saying ‘good, good’ or ‘good job!’ after they accomplish an action. There’s plenty of evidence from motor learning science that says the best type of feedback comes at the end of an action (called ‘summary’ feedback) (Allen, Page & Jog, 2002). You want your client to stay curious in learning, not to perform for you. When learning motor skills, saying a commemorative ‘good’ at the end of task interrupts the brain’s problem-solving abilities. Your client is not there to please you. The lesson should enhance pleasure and interest, and not carry the tensions of performance inherent in the judgment of rightness or wrongness. The next time you encounter what you interpret as ‘erroneous’ execution of an action, inhibit correcting the client or inversely, commending him/her for doing something ‘right’ when it appears ‘normal.’ Otherwise, you have to help them unlearn the stiffening that results. Better to simply say after a pause: ‘How did you do? Let’s have another go at this’ – and choose a different cue.
10. Novelty
One of the basic tenets of neuroplasticity and motor learning is novelty. It’s important to repeat, but with variation. Sit-to-stand might involve different chairs, chair vs edge of table, cushions on the seat pan or on the floor. Routine tasks with variability – with a bit of rhythm or increase in amplitude, can be useful. Crossing a small obstacle while walking – a stick or strip of tape on the floor – offers teachers a range of options for addressing poise.
After all is said and done, I am confident that you have all the tools necessary to teach anyone who walks through your door or visits you online! My tips serve as reminders that we need to do less, not more. One of the many rewards of teaching PlwPD is the gratitude for helping these folks uncover the elusive ease that they believed had vanished. The time you spend with them is a welcomed gift of returning home to their own embodiment.
Notes
Dance for Parkinson’s (https://danceforparkinsons.org/ is the go-to resource for learning and training. Founded in 2001, as a small pilot study in Brooklyn, New York, sponsored by the Mark Morris Dance Company, Dance for Parkinson’s is a global enterprise offering classes in over 57 countries, opportunities for research exchange and training.
In November 2019, the Parkinson’s Foundation (USA) (www.parkinsons.org ) and Parkinson’s UK (www.parkinsons.org.uk ) partnered together to share research and resources for patients and professionals alike. https://www.parkinson.org/about-us/Press-Room/Press-Releases/PF-Partners-with-Parkinsons-UK Accessed 01.01.21
Further information
The Poise Project is a non-profit launched in 2016 that serves the general public. Its sole mission is to remove barriers to Alexander technique (AT) education across broad socioeconomic groups and for people living with chronic conditions. As part of a strategic model, it has eight distinct activity focus areas, all geared to increase accessibility to AT for the general public. These include: designing and delivering continuing education for industry professionals about Alexander technique; networking in special interest groups to advocate for AT jobs in clinical, educational, and other industry settings; designing and conducting research on replicable and scalable AT-based course curriculum; leading postgraduate trainings and creating trainee internships to prepare AT teachers to meet the demands of new jobs serving specialized target populations; identifying new economic models and locating funding sources for alternatives to the current AT private practice/private pay model; and advocating for AT by attending conferences around the world and hosting exhibit tables with small teacher teams. The Poise Project teams have presented AT-based research at numerous national and international conferences. The success of the AT for Parkinson's initiative has become a model for many other population specific initiatives that AT professionals can now focus on in a similar way. https://www.thepoiseproject.org/future-initiatives
Also see Cohen R, Alexander Technique Science: Peer-reviewed Research on Mind, Movement, and Posture. Posted 2nd of September 2019. https://www.alexandertechniquescience.com/general/overview/science-catches-up/
References
Adams SG, Page AD, Jog M. Summary feedback schedules and speech motor learning in Parkinson's disease. Journal of Medical Speech-language Pathology 2002;10(4):215-220.
Batson G, Hugenschmidt CE, Soriano CT. Visual auditory cueing of improvisational dance: A proposed method for training agency in Parkinson’s disease. Frontiers in Neurology. 2016; 7: 15. http://journal.frontiersin.org/article/10.3389/fneur.2016.00015/full
Batson G, Soriano CT, Laurienti P, Burdette J, Migliarese S, Hristov N. Effects of Group-Delivered Improvisational Dance on Balance in Adults with Middle Stage Parkinson Disease: A Two-Phase Pilot with fMRI Case Study. Physical & Occupational Therapy in Geriatrics, 2014; 32:3: 188-197.
Himberg T, LarocheJ,Bige R, Buchkowski M, Bachrach A. Coordinated Interpersonal Behaviour in collective dance improvisation: The aesthetics of kinaesthetic togetherness. Behavioral Sciences. 2018; 8(2): 23; https://doi.org/10.3390/bs8020023
Rose N. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century, Princeton University Press, 2007.
Stallibrass C, Sissons P, Chalmers C. Randomized controlled trial of the Alexander Technique for idiopathic Parkinson’s disease. Clinical Rehabilitation 2002;16(7):695-708. doi: 10.1191/0269215502cr544oa.
Biosketch
Glenna Batson, ScD, PT, MA qualified in the Alexander Technique in 1989 (Philadelphia, PA). Professor Emeritus (physical therapy, Winston-Salem State University), Glenna remains an independent movement teacher and artist. In 2007, she conducted a clinical group-delivered study on the AT and balance in the elderly, co-taught with Sarah Barker (https://www.youtube.com/watch?v=lNf5bGRwhZA). Between 2009-2016, Glenna researched the effects of improvisational dance on balance in Parkinson’s. Formerly the co-director of the Alexander Technique Centre (Galway, Ireland), Glenna continues to contribute to the Alexander Technique commons. She trained with Monika Gross (2018 and 2019), piloting the first local study that combined PlwPD and their care partners in North Carolina. She teaches Somatics: Embodiment for the 21st Century for the Duke University Dance Masters’ programme. Her practice-based artform, The Fold as Somatic/Artistic Process, is a growing collaboration of workshops with multimedia artist Susan Sentler (www.humanorigami.com). Contact: glenna@humanorigami.com
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