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

It Takes a Community...

School holidays have just finished here in Auckland, and we are now settling into the last mad dash of fast paced weeks leading into the holiday season and summer.  Normally when working with adults in rehabilitation or fitness settings the timing of the school holidays doesn't really have any impact on service delivery.  However, the lovely community centre where I hire space for my Parkinson's CE group runs a plethora of children's programs during the between term holidays, and my lovely little room is not available so we take a break.

Many of the people attending this group have been coming fairly regularly since last September and all but one -- who is moving out of town -- have signed up for the next term which starts this Friday.   Before we broke up at the end of the school term I surveyed them to find out what they were happy with, what parts of the program they enjoyed the most or found the most useful, what they didn't enjoy, what they struggled with, and what suggestions they have for future sessions.  I gave them the choice of anonymity so that they could be honest and open in their response.


I carefully listed out elements my carefully structured program for my clients to give feedback about in language that was clear and accessible (this is an incredibly intelligent bunch of people -- but that doesn't mean that they know or care what a task series or rhythmic intention is).  I listed things like learning to change position and to stand up fluently, seated exercises, arm and shoulder exercises, fine manipulation and handwriting, speech and facial expressions, walking and balancing activities, memory and concentration work, stretching, and I included the pre-program greeting round and the post program morning tea amongst my activity list.

I list these out because from my perspective each are so important and a lot of planning and thought goes into getting ready to lead a large Parkinson's group.  My clients were all happy with the program and with the balance of the activities and few had suggestions about what they wanted done differently.  They listed outcomes that included better balance and being able to get up from the chair easier or safer, or having less shoulder pain.  But when asked what the most important thing that they got out of the group was, not a single person listed an activity or something mobility related.  You guessed it - psychosocial outcomes were once again featured as the most important.

Here are some of the responses:

"Having Parkinson's feels more normal to me, I see that everybody is affected differently and I don't feel as strange in this group" said one person;

"I have more confidence in myself" said another.

"Realizing that exercise is more pleasant when done with other people" said VW;

"The way the others encourage me" said RH;

"Enjoyment of the group" stated BB, "Oh, and the laughing!"

TM wrote "companionship"; DS noted "fellowship"; JW agreed with one word, "friendship".


Two weeks later, I still get shivers reading these responses.  I feel so proud of this little micro-community, and of the positive and supportive environment that they provide for each other, which allows them to thrive and blossom despite having Parkinson's.  Two weeks later, and that really isn't a very long time, I realize that I miss them.  That I miss the community spirit of this wonderful group and their wives or husbands who often come along; That I miss the laughter, the fun, the games, and the fellowship, and that I'm glad that the school holidays are over and that I look forward to getting my dose of this wonderful community again this Friday morning.
 

It's how you get on the stretcher that counts...

It is never nice to see someone go to hospital by ambulance JW, but now that I know you are home and on the mend I want to tell you, and tell the world, how proud you made me in the moments just before you got into the ambulance.  

I don't want to write about how the colour of your face scared me when we first called the ambulance.  I also don't want to talk about how awesome we must have looked to all passerbys while we were both lying in the mud behind the building near the parking lot waiting for the ambulance.  I don't even want to talk about the great team work and kindness of friends and strangers alike that went into the first aid and into ensuring that though we both were covered in mud we were protected from the hot noonday sun - even though all of these things are worthy of talking about, I have something else to say.

I want to say that you did me, and the conductors you have worked with before me, proud.  You participated in getting up from the ground.  There were three paramedics, myself and my assistant, and four bystanders all trying to give you instructions.  You very clearly told everyone to stop talking because your brain couldn't take in or make sense of so much talk.   In a moment when you were at your near worst, you took control of the situation and told us all what you needed.  When I asked you to focus on just me, you locked in, maintained eye contact with me, and step by step, with one movement rhythmically commanded at a time, we got you sitting on the edge of the stretcher.  The paramedics tried to lie you down.  You said no, it's better if I do it myself, and, exactly as we've practiced week after week getting on and off of the plinth, you swung your legs up and lay yourself down unassisted. 

You made me proud JW; you showed me that you've mastered what we've been doing together over the past couple of years and that it makes life easier for you, that you can use these techniques when it counts, and that they can be used even under imperfect conditions.  I was proud - any conductor would have been proud.  That said, the next time you want to show off a skill, to demonstrate that CE is is about functional mobility, I would really appreciate it under pleasant calm circumstances instead of somewhere between a mud puddle and an ambulance good sir.