When life gives you Parkinson's, COUNTERPUNCH

The last few months have been busy, and a bit all over the place for me, to say the least, and my blog has been sadly neglected.  Resuming private practice and building a business that is sustainable and reflective of the work I want to be doing in Conductive Education and personal training while trying to get a semblance of work life balance have been energy and time consuming processes.  My business is starting to take shape - some conductive groups, some private clients that I see in their homes, some personal training at a groovy gym with a great team of fitness professionals, some consulting, and lots of boxing groups for people with Parkinson's. I'd like to tell you a bit about what I'm doing with boxing groups for people with Parkinson's, why this appealed to me in the first place, and about why I love and value this aspect of my work so much.

For the past several years I've been reading about the work of an organization called Rock Steady Boxing based in Indianapolis, USA - in recent months I'd say seldom a week passes when they do not come up in my RSS feed.  Starting serendipitously - one person with Parkinson's boxing intensively with a trainer and seeing dramatic improvements - Rock Steady literally have taken the idea that non-contact boxing might be a useful exercise modality for people with Parkinson's and put it on the map.  They have developed programs, they have upskilled fitness and allied health professionals, and now have over 150 affiliated organisations and gyms offering their program in North America.  

Find out more about Rock Steady HERE

Part of what caught my attention about the Rock Steady program is that it seemed to bring together disconnected parts of my two professions.  I have been working with people with Parkinson's in Conductive Education classroom settings for nearly 20 years.   As a personal trainer with boxing qualifications, I have been using boxing based training with many of my clients and have enjoyed adapting boxing drills to make them wheelchair friendly - and love boxing as part of my own fitness work too.  So at this very base level the idea of boxing groups for people with Parkinson's was exciting, and the idea niggled at me, kept calling me, and I decided to try to get a program running here in Auckland based on my own knowledge and experience, so I could see for myself how it might work.  

In October of last year SM, a colleague in the fitness industry, and I trialled a Parkinson's boxing group at the local YMCA where she worked -with some of the wives of my boxers and my husband helping out as program assistants.  The program went from a handful of brave participants all known to me to a large group in a matter of months.  We quickly outgrew the space we were using at the YMCA and I approached Shane Cameron, the owner of a local boxing gym and a New Zealand boxing champion about bringing my program over to his facility. I showed Shane what Rock Steady were doing in America and he came to watch my boxers - and he saw the magic that I saw.  

One of my boxers taking on Shane

Shane and I are now working towards emulating the Rock Steady model here in New Zealand, customising a program we have called COUNTERPUNCH PD and developing a training module for fitness professionals, and working to make COUNTERPUNCH PD available to people with Parkinson's nationally in NZ - watch this space for more details.  I will travel to Indianapolis to do the Rock Steady training course in August and am so excited about that; I am equally excited about experimenting with and encorporating Conductive Education tasks and methodology in a boxing environment and about making this program my own.  

Research has qualitatively and quantitatively supported the Rock Steady program.  However, the anecdotal and human interest stories featuring people with Parkinson's talking about what they get out of boxing groups speaks far louder to me.  It has been exciting and affirming to see my boxers make improvements and speak of the same results.  

Have a look at Research about Boxing for People with Parkinson's HERE

It should also be noted that they exercise guidelines for people with Parkinson's have changed a lot over recent years with higher intensity exercise such as boxing being recommended, and the idea that the right exercise can be neuro-protective and promote neuroplasticity has been thrown around - I will address those concepts in a blog post in the very near future.  

From a Conductive headspace, there is so much about boxing for people with Parkinson's that makes sense to me - the use of visual cuing and rhythm for movement, the use of voice with movement, having something tangible as a target for movement; directly addressing movement challenges of Parkinson's such as complex coordination, agility, balance, speed and size of movement and practicing them and working to make them better instead of accepting them as problems; working in a positive and social group of peers; having fun; being challenged and being expected to rise to the challenge; the idea that there is an active and empowering approach that enables people to feel like they can do something to take control of their Parkinson's; the allegory of literally fighting Parkinson's - of being able to COUNTERPUNCH - and the sense of hope that comes from fighting. 

Watch a video featuring one of my boxers talking about the program

I love all of those aspects - boxing for people with Parkinson's makes clinical sense and is effective. But what I love most is that every session people with Parkinson's walk into the gym and as they put on their wraps and gloves and head out to the heavy bag or speed bag to warm up they transform into boxers, or kids happily playing, or some amazing combination of both.  I almost forget that they have Parkinson's - but more importantly, at least for that hour they seem to forget that they have Parkinson's.  It is amazing, magical, and transformational - and so much fun to be a part of.

It's a long way to the top and other lessons in humility...

A conductor is certainly a specialist, but there is a very big difference between being a specialist and being an expert - and I love that difference.  I specialise in teaching people with neuro-motor disorders strategies and skills to enable them to manage their bodies better.  I don't make up these tricks and techniques, they are not my intellectual property - and I see my role, my specialty, as being able to articulate and share these solutions as openly and as freely as possible, and to facilitate the process of sharing and tweaking solutions that have worked for other people with similar challenges.  I have learned some of these tricks from other conductors, but most have been learned by being a partner in a problem solving process with an individual, and more often by letting my clients teach me the tricks they have worked out for themselves.  This means that the expertise and success are not mine; it means that I am teacher-learner combined, it means that I'm always on the lookout for new tricks to add to my repertoire and therefore always open to learning and growing, and it means professional humility is a part of being a conductor and I love that.

Lessons in humility come packaged in many wonderful formats.  Last week BC, a private client decided to stop training with me.  BC is a woman with advanced Parkinson's who started training with me because she was having frequent falls and trouble getting out of bed.  After a few weeks of private in home sessions she had mastered the tricks and techniques we had been working on to the point that she is no longer falling and can now get out of bed unassisted, and she no longer needed me to come to her home and practice with her.  I could choose to dwell on not being needed - but in reality no longer being needed is the best possible outcome and I'm celebrating. Conductive humility means knowing it is not about me - and that it never was - and there is nothing better than being around somebody who learns something and stepping back to let them own it.

Lessons in humility are sometimes delivered by posties on motorbikes. RP is a stroke survivor and a Harley Davidson enthusiast who has set up a rehabilitation space in his garage with parallel bars and steps - a dream workspace for a mobile conductor.  Last week while I was there working with RP, the postie - a big burly guy on a motorcycle - came up the long driveway to deliver the mail.  This week the same postie came up the driveway on his motorcycle. He had no mail to deliver, just wanted to tell RP that a few years ago he had been in a bad motorcycle crash resulting in a brain injury, and despite what everyone told him he was now walking again, and was back on his motorcycle, and that RP shouldn't give hope.  That day, for the first time, RP and I walked all of the way down and all of the way back up his long driveway.  This week RP did it again, twice in one session.  Conductive humility is being able to celebrate that after months of RP and I working towards something together and of me encouraging and teaching RP, what got him over the hump was a burly postie on a motorcycle and his heartfelt act of kindness. 

It's a long way to the top - but he made it!

More about Conducting "Enable Me"

I know that my role in the "Enable Me" project is personal trainer / exercise lady.  However, I have been switching hats a lot lately -- mid session and discreetly taking my personal trainer hat off and slipping my conductor hat back on, barely stopping to notice how comfortable it feels, but noticing the change in my tone, the way sets and repetitions of exercises give way to rhythmically intended tasks, the subtle stylistic changes in the way the session is delivered.  The people I work with in this project are in their eighties -- if they notice the hat change they don't react though they certainly respond.  Whether what I am doing would look and sound normal in a CE group but seem a bit odd in the gym is irrelevant to these people for whom the concept of a personal trainer is as foreign as that of a conductor.

Don't get me wrong -- I am passionate about how valuable exercise is for people of all ages and abilities and firmly believe that exercise helps people stay strong and healthy and can actually intervene with what is often presumed to be an inevitable part of the ageing process.  But there are times when what is needed and what is more appropriate in a given moment or over a few weeks of working with a particular person is Conductive Education -- the learning, the structured approach to problem solving, the way of breaking complex movements into manageable segments, practicing them, and stringing them back together as fluent, purposeful movement, the use of speech and rhythm and intention and motivation as facilitation -- in other words the unique tricks specific to the conductive trade.

Mr LH's file says that he has had a frozen shoulder, has had a few falls, and has mild cognitive decline.  In reality Mr LH's movement and cognition is characteristic of something in the Parkinson's plus family of conditions -- I of course wouldn't try to guess or diagnose, that is certainly not my role, but I am pleased that the case manager and physiotherapist accept my experience based hunch that there is something neuro-motoric going on and have written a letter that Mr LH can take to his GP recommending further investigation.  I am even more pleased that Mr LH has spontaneously started rhythmically saying tasks and counting with me (it is often hard for me to get people to count and say tasks in individual sessions, especially if they have not experienced the power of rhythmical intention in a CE group); I am even more pleased that when he counts he can walk and swing his arms and get up from a chair and coordinate complex movements.  I hope -- as I often do about my 'hunches' -- that I am wrong and that there is no neuro-motor disorder creeping in.  Without my training and experience as a conductor I would have no entry point for working with Mr LH -- I wouldn't know where to start.

Mr GL had a major stroke 15 years ago -- at the time he was fit and healthy and his stroke baffled his medical team and shocked Mr GL and his family.  The 'Enable Me' case manager wasn't sure if this was something a personal trainer should be involved in and called to chat with me about how frail Mr GL was and about his increased risk of falls.  I reminded her that I had many years of experience working with people after strokes in my previous life as a conductor.  Today Mr GL and I had our first session -- within minutes it felt like we had been working together for years.  I knew right away which tasks would work and what tricks to start him with, where to put my hands, where to push him, what it must have felt like for him to have his posture and symmetry and weight bearing corrected after 16 years.  I saw his eyes light up when he conquered a task that moments ago had seemed impossible -- a few moments and a little conductive magic make a big difference when those moments are spent practicing and learning to apply nifty little CE tricks.

There have been a lot of people in the 'Enable Me' program that have been deemed too frail for personal training and who have instead received physiotherapy only instead of a combined approach -- there are a lot of people in the 'Enable Me' program that I would have been able to help if I had been given the chance to work with them.  I got the contract with the 'Enable Me' program because of my work as a Conductor -- somebody whom I used to work with at the local cerebral palsy centre referred me and people involved with the program saw me working at the gym with people in wheelchairs.  But I am contracted as a personal trainer, and what I bring to the table as a conductor is not fully understood or recognized, and therefore opportunities to help people as a conductor have been missed.  At this point I do not believe that Conductive Education will even get a mention when the reports about the 'Enable Me' project are written up.  I hope I can correct this but I am just not certain it will happen.   I wish that when the contract was negotiated I had had the guts to stand up for Conductive Education instead of just being glad for the opportunity to take part.

Over and over and over again I hear people relate the advice they have been given by well meaning professionals -- 'you have CP / MS / PD / stroke / old age / whatever, there is nothing that can be done, accept it'.  That is just not how we think in Conductive Education -- because I am a conductor I have a place to start and a unique bag of tricks and conductive magic, but more importantly I have a conductive attitude that makes me believe that there is always something that can be done, something that can be learned,  that it is worth trying, so I do start, and start again, and try something new if one thing doesn't work.  I'd like to think that I am the same when I am wearing my personal training hat -- and I know that if I am it is because that conductive attitude is so much a part of me now, or because no matter what role I'm in, I'm always wearing my conductor hat.

http://195.122.253.112/public/mp3/Beatles/14%20Let%20It%20Be/The%20Beatles%20-%20Let%20It%20Be%20-%2010%20The%20Long%20And%20Winding%20Road.mp3