On creating the Counterpunch Community

This morning I had the urge and the time to revisit this blog, which I realize has been sadly neglected over the past couple of years.  I spent quite an emotional morning revisiting some of my previous musings, reflecting on what I have been up to lately, and on the list I've been keeping about blog topics I would like to explore.  And yes Andrew, I am going to try to resume regular writing again.

Part of the incredibly joy of being self employed is the freedom to allow my practice to flow and develop and change over time.  If you would have asked me two years ago where I saw my work heading, every single prediction I made would have been wrong.  I am so grateful for so many of the life lessons gained from a career in Conductive Education, not least of all the lessons of being able to stand on my feet, to take risks, and work from a place of intuition guided by experience.

Over the past two years I have had the unique opportunity to build something from scratch, to make something happen, to set something in motion that is bigger than me.  That something is Counterpunch Parkinson's.  I correctly read an exciting trend that reflected not only the best practice and most up to date guidelines for exercise for people with Parkinson's, but a trend in community based empowering programs that people are excited to be a part of.  I have been able to take an amazing idea that continues to gain momentum in America through our big sister organization Rock Steady Boxing, and have found a way to not only introduce this program to my practice but to build a New Zealand specific accredited training program so to upskill other coaches and to therefore reach many more people with Parkinson's than I'd have been able to reach single handedly.  We are about to run our fourth coach training program; we now have 27 accredited coaches and programs running at 10 locations with more to be launched in the very near future.  In a very short time we have become a trusted and recognized brand and referral destination trusted by neurologists, specialists, and doctors, mainstream organizations like the Parkinson's society, and physiotherapists from within institutions like district health boards.  To be honest -- I still really can't believe that in such a short time we have come this far, but I am so proud.  It is an amazing and humbling feeling to see photos on Facebook of a coach wearing our branded T-shirt running a program in a gym I haven't been to with people with Parkinson's I've never met.

There have been many very unexpected joys in the program development process --

I have had the opportunity to run workshops for people ranging from absolute no understanding of Parkinson's to a peer and above level professionally  -- we are talking about experienced neuro-physiotherapists -- and to engage with them on a common ground that has become a common passion.

I have enjoyed bringing people from an array of professional backgrounds together - physiotherapists, strength and conditioning coaches, personal trainers from all walks of life, boxing coaches and professional boxers, kick boxers, and other martial artists, occupational therapists, speech therapists, people with Parkinson's, spouses of people with Parkinson's, and yes Conductors all sitting around the same table over a coffee and a bliss ball, all bringing their open minds and strengths to that table.

There is a community that has developed -- coaches helping each other out, for the good of the program; coaches helping me out because they want to learn ... a young personal trainer working along side of me in my groups -- the whole class is going to watch his first boxing match; a brilliant physiotherapist and elite boxer co-facilitating my conductive education group.

There are communities within communities now accessing our services - one of our fabulous coaches runs a program in a part of Auckland where lots of Pacific Islanders live -- I went to his program launch and was overcome with emotion and humility hearing him speak Samoan to people I otherwise would have struggled to reach.

Finding the place where my husband (a.k.a Head Coach Alexander a.k.a Commander Xander) and my professional lives intersect and being able to work together on something we both love.

To have something that is built into my week that I enjoy so much and have so much fun doing.  People who have trusted me that this journey was worthwhile even though I was not able to promise financial reward.

To see the amazing friendships and camaraderie between our boxers and volunteers of all ages...

To see my business partner Shane Cameron develop his own range of products and services, and thus realize some of his other professional goals, all springboarding from his support of Counterpunch Parkinson's.

And, of utmost importance and a source of immense personal and professional joy, running a service that is so loved and valued by our boxers.

All of these intangible bonuses have brought so much additional pride and joy to my experience of building Counterpunch, and has renewed my passion for my work as well as my entrepreneurial drive to keep developing and building on what I have to offer to people with disabilities and their families.  I feel alive; directed, purposeful.  I hear myself saying things like 'it is one of the greatest joys to be able to do what you were put on the planet to do.  I have energy and focus for my work that I haven't had in a long time and that all feels good.

There is still so much that we want to do with Counterpunch.  It is also sometimes so hard to believe that something that is in actual fact only a tiny proportion of my work hours has had such impact and has helped breath fire into the rest of my practice.  I am inspired; I am excited; and I am composing blogs in my head and having the urge to write and share again.

Please jump over to our website to find out more about our coach accreditation and affiliated programs - you can find us at www.counterpunchparkinsons.com

With a song in my heart ...

Last Thursday I went to a Parkinson's singing and voice group that is hosted locally by the wonderful RZ, a professional singer accompanied on piano by her husband MG.  The group is attended by several people from my Conductive Education Parkinson's exercise group and from my Counterpunch Parkinson's classes.  

On the day I attended there were 17 or 18 people sitting in RZ's living room -- and I am told that several were missing -- I'd like to think that it wasn't the thought of listening to me sing that kept them away... This photo doesn't do justice to the wonderful site of two rows of people - two rows of people with Parkinson's and some of their husbands or wives smiling, laughing, chatting, sitting up straight (and sometimes standing), and of course, singing. 

I enjoyed taking part in the singing and I enjoyed being in a room full of people singing -- and for the rest of the day I had songs in my head, a smile on my face, and a song in my heart.  Actually I still feel that song singing in my heart every time I think about the experience.

There certainly are physiological benefits of singing and voice work for people with Parkinson's -- improvements in speech and voice control, articulation, volume, facial expressions, breathing, and posture -- but these almost seem like a side effect to the psychosocial benefits of making of music and merriment,  to the act of defiantly raising voices in song instead of being hushed by Parkinson's, to the positive mantras the singers were being encouraged to shout or sing when energy or volume started to lag offering messages that echoed and resonated well into the next song, to the way that singing together reaches in and touches people's souls and connects these souls to each other.

"I sing sometimes like my life is at stake, 'cause you're only as loud as the noises you make.  And I'm learning to laugh as loud as I listen, 'cause silence is violence ... And we can make music like we can make do..." -- Ani DiFranco, My I.Q.

My heart from the experience of singing, not just with any people, but with this group of people. My heart sang from the experience of watching RZ passionately lead the group through song and voice work -- for the opportunity to sit at the feet of a master of her craft and to listen to her sing and to be a part of a group that she was running, and the sense of gratitude for the opportunity.

And, my heart sang with pride - for RZ is not just a wonderful singer and teacher, RZ is one of my Conductive Education students, a woman battling her own Parkinson's.  My conductor's heart sang watching my participant in her orthofunctional glory standing in front of all of these other people teaching, giving, leading, conducting, encouraging, motivating, and singing.  Thank you RZ, from the bottom of my heart for what you are doing for your singers, and for showing us all what it means to rise above, and to raise our voices in song.

Here are two of my favourite songs that make my heart sing, and here is to you and your singers RZ!

Sing, sing, sing                        Singin' in the Rain

Exercise and the brain...

 Exercise recommendations for people with neurological conditions like MS and Parkinson's have changed drastically in recent years.  We know a lot more about neurological conditions, we know a lot more about exercise, and we know a lot more about neurology - and we know that we are only at the tip of the iceberg about what there is to know about all of these things and their interactions.  It is actually really important to understand that exercise recommendations have changed for everybody - the general population, athletes, people wanting to lose weight, older adults, people managing injuries, people with illnesses - so it really should be no surprise that the recommendations have changed for people with neurological conditions.  

When it comes to exercise as a tool for promoting brain health, it actually doesn't matter if you do or do not have a neurological condition -- the exercise recommendations are the same.  Though we talk about the benefits of exercise for people with neurological conditions, it needs to be made clear that these guidelines are for everybody who might be looking at exercise as something that might discourage disease progression, that might protect our brain cells from ageing, that might encourage our brains to continue to adapt throughout our lives, or that might promote healing of damage or injured brain tissue, the exercise.    The right exercise may in fact help us stave off or delay onset of neurological conditions by making our brains healthier and more able to fight disease, and exercise habits learned and enjoyed before the onset of a neurological condition  are easier to sustain and adapt than to introduce after a diagnosis.  

When we are talking about exercise and brain health, we are talking about more than efficiency of oxygen supply or muscle strength or mental health or cardiovascular endurance.  We are asking if exercise might promote neuroprotection, promote neuroplasticity, or even encourage neuroregeneration.  And more and more, based on the little bits and pieces that we do know, we think that the answer to that question is yes.  However, just as we know that certain exercise is better for promoting muscle growth or weight loss, we also know that exercise for brain health needs to meet certain criteria.  Let's explore this further.

One of the new guidelines for people with neurological conditions is that at least for short intervals, exercise should be at a high intensity - high enough to get their heart pumping and for them to feel puffed.  This is because when exercising at this intensity our muscles produce a nifty little protein called cathepsin B.  Cathepsin B travels to the brain, and in the presence of cathepsin B, our brain cells start to produce neurotrophins which kick start new cell growth - also known as neurogenesis.  The research also indicates that long term consistency of exercise involving periods of high intensity, over weeks, months, and years, is more important than the duration of individual training sessions when it comes to this effect.  

We also know that strenuous exercise might influence how certain genes function in the brain.  For example, strenuous exercise encourages our brains to make a substance called "brain derived neurotrophic factor" or "BDNF".  When BDNF levels are low, we are more likely to see cognitive decline but when BDNF levels are sufficient or high we see brain cells grow and remain healthy and vigorous and we see more efficient connections between brain cells allowing the brain to function better.  But that isn't all - if someone is sedentary the genes responsible for BDNF production may be muted or get gunked up by other molecules.  However, during higher intensity exercise ketones are produced.  Ketones -- byproducts of our bodies using fat as an energy source -- protect the BDNF gene by stopping other molecules from being able to gunk that gene up - an example of how exercise can be neuroprotective.

The idea of neuroplasticity is even more exciting - especially because the guidelines and reasonings are 'more tangible' and less 'neurochemical'.  Neuroplasticity refers to notion that our brains are capable of change over our lifetimes, that our brains reorganise themselves physically and functionally in response to learning, our environment, our behaviour, our thinking, our circumstances including injury or trauma, our motivation, and our needs.  Neuroplasticity is also, paradoxically, a scary idea - because in the same way that we can do positive things things to encourage our brains to be more adaptive and to grow and change, we can do negative things or do nothing which actually will reinforce negative changes and patterns.  By this token, "use it or lose it" really applies to brain health; if we use certain connections they will get stronger and more plentiful and the connections we do not use will weaken and wither. 

In order for exercise to promote neuroplasticity it needs to be challenging, frequent, mentally and emotionally engaging, reinforced by positive feedback and positive results, fun, specific, worthwhile, and relevant or goal specific.  This type of exercise includes trying new things, leaning new skills, having fun, and being fully present and engaged while we are doing so.  Regardless of whether we do or do not have a neurological condition, this type of exercise is really important to brain health.   We are never too old for it, and from a human and psychological point of view it is exciting to think that by challenging ourselves and being engaged and having fun we are also promoting brain health.  

These are just some of the emerging ideas about exercise and brain health, and why the exercise guidelines for people with neurological conditions as well as those for the general population are changing.  It will be really exciting to follow the research in these areas over the next few years and to see how the health, fitness, and education practice shifts as a result.


Some light reference reading can be found here:

How Exercise May Help the Brain Grow Stronger

The 10 Fundamentals of Rewiring your Brain

Does this exercise protein boost your brain power?

Exercise triggers brain cell growth and improves memory, scientists prove

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