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.
 




Tell me what you want what you really really want

Writing a blog is a relatively bizarre form of communication - I get an idea that bounces around in my head for a few days until it somehow morphs into sentences. It is usually something that touches me about someone I work with, or something that puzzles me or unsettles me, and is usually something that I'm directly interested in or passionate about that is to do with my practice and the intersection of my practice with the rest of my life.

I really like writing and have promised myself to do more of it - but I'd like your help.  


Are there things about Conductive Education or the health and fitness industry that you would like me to write about? Condition specific topics or something new in research or treatments or something about your condition in the news? Advice needed or challenges we can hash through? Things that make you crazy or angry, that get your heart pounding, or that you just want to to see if others are experiencing? I would love you to send me your ideas or questions - I would love to engage you more in my posts and to be able to be responsive to what interests you.  I won't know the answers to everything you ask me but I will either do my research or find someone to answer things for us.  I want to see this blog be a connective tool that serves the Transformations and Conductive Education community.  I want to hear from you!



I also would love to have guest blog posters - perhaps you are a conductor or other health or fitness industry professional that has something to say, would like to tell other people about your expertise or services, or would like to have a conversation or dialogue with me.  Maybe you are a service user, a client, a consumer, with a rant you want to get off of your chest, something that might help the world understand your perspective, something you have learned from the university of life.  Maybe you want to give blogging a try to see how putting it out there feels for you before you start one of your own.  Don't be shy - I can help you with editing if you want it, you can be anonymous if you prefer, let's get it out there!


So big bad world way out there on the other side of my iPad - tell me what you want, make suggestions, ask questions, send me your guest posts, make some NOISE - lisa.gombinsky@gmail.com is the best way to find me or message me of Facebook, or call, text, even send me some snail mail.  This offer is open and ongoing - I'd love to hear from you and I'd love to see this blog grow from being something that is just my random ramblings into something that brings value to this community.  I can't wait to hear from you - game on - who will hit me up first?

Eight million things I love about Em

One of the most wonderful ways to mark time in this profession and on this planet surely must be the pleasure of seeing kids that you conduct evolve and grow into wonderful young people.  Last week I had the pleasure of indulging in this experience for an entire week, when ES decided to hop on a plane from Sydney to Auckland for a visit and a good old fashioned CE kick in the butt.

You can know she is working on her second university degree, you can see her driving around the neighbourhood in her own car, you can go to her 21st birthday.  But suddenly there she is, in another time and another place, confidently introducing herself to a class full of adults, talking about her disability like it is the weather or the cricket, self motivated and focused during the program like all of the other, well, adults.  Suddenly there she is sorting herself out, getting up and dressed on her own and going to bed later than me, ordering cocktails or coffees or whatever she wants, checking to make sure I'm okay after a hectic day, and holding her own in conversations about educational psychology and disability reform and politics. There she is at the airport patiently explaining to the desk staff that she is a person requiring assistance and that no she did not require me to accompany her to the departure lounge (!).



It is hard to describe the way I feel about ES.  There is respect and awe; respect for the journey (which I hope one day she will write about) that she has taken to get to this stage in her life and awe that despite it all she has turned out so wonderfully.  There is pride and gratitude; pride as in I'm so proud to know this person and to introduce her as a friend, pride around seeing what she has become and what she has yet to become and gratitude for what I have learned and experienced by getting to be a part of her journey for the last decade.  There is fierce big sister style protectiveness that has pretty much been outgrown and has been replace by friendship. There is the dance that has to be done whenever a relationship grows and changes which can be disconcerting until you remember that this is what people who see each other through life's transitions have to do to move into the next chapters together.

I see her fall on the beach at Takapuna - the first time she has fallen with me in all of our years of walking together - and see her stand up and brush the sand off of her jeans and laugh about getting wet.  Years ago falling would have devastated her but now this young woman has learned how to fall without falling to pieces and knows how to bounce instead of break.  I find myself wanting to write about her transition, realising that it is not my story to write, and hoping that one day she will tell the world how a fragile and emotionally wrought teenager psychologically trapped by her cerebral palsy finds her way into resiliency and rationality and confidence in adulthood.  I listen to how she talks about how she thinks and feels, about the ups and downs of life in the last few months, and can't help but be amazed at how she now rolls with the punches instead of letting them knock her out, how she gives as good as she gets, and how she now understands her own self worth and is willing to fight for it.



She leaves, and the house is quiet, and I settle back into my routines wishing that I'd had a bit more time to talk to her and that work and life weren't so hectic.  She leaves but isn't gone, like those wonderful people that dance in and out of your life over years and decades, and I realize that we have both watched each other grow up - and that kind of scares me, and I start to think about all of those other wonderful 'kids' making their way in the world of adults as wonderful young people.  I am reminded again how lucky I am to be in a profession that allows me to be on or at least bear witness to these journeys, how lucky I am to be in a profession that allows me to get to know and love so many wonderful people, how lucky I am to be a conductor.

ES, 'I hope you don't mind, that I wrote down in words, how wonderful life is, with you in the world!'



Dodging raindrops and finding my feet...

I know I've gone quiet lately.  The past several months have been tumultuous -- I've effectively shut down a business and a chapter of my life, moved country and started a new challenging job, and I guess it is hard to find your voice when you are busy trying to find your feet.  And no, this is not the first time I've jumped from one life chapter to the next, but for many reasons it has been the hardest.  I realise now that part of why this transition has been so challenging is that I underestimated how tenacious the personal and conductive roots that connect me to Sydney have become.

It was heart wrenching closing down Transformations.  It is always hard to say goodbye, and even though I know that friends and clients who over the last decade have become mentors and friends will stay in touch as many from other chapter have done, the nature and consistency of relationships must change.  We always talk about how two way conductive relationships are, and it was very hard to step away from people who have supported me and everything I've done personally and professionally over the last decade.

To add insult to injury, I spent the better part of the last three months in Sydney desperately looking for appropriate people in the rehabilitation and fitness industry to hand my regular clients over to.  I brought carefully considered hand selected trusted colleagues and professionals I respected to meet my clients, hoping they would carry on my work, and many of them balked.  I found myself having those conversations, the ones where people tell you that they could never do what I do, with trusted friends and colleagues and I felt like they were rejecting a part of me when they said they didn't think they could take on one of my clients for an hour a week.  I was reminded of a challenging discussion that Andrew Sutton, back in my student days in Birmingham, lead us as first year students through about understanding that in a profession like the one we had chosen, we were choosing to have disability in our lives, but that we had to have compassion and awareness that it was not something our clients and their families actively chose.  I guess I forgot that the world that is so normal to me, filled with people I value and hold so dear, is such a strange and scary world to so many other people, and I took it really personally that even as a favour to me, let alone the gift of regular client into someone's business, respected professionals would not choose to be involved in my world.

In Conductive Education we have always heard about families who have travelled halfway around the world and disrupted their lives and families so that they would access Conductive Education for their child.  We also need to talk about the wildness of being a part of a profession where the only opportunities for employment in your field often necessitates disrupting your life and family and moving to another corner of the world.  I love, and am grateful for the opportunities and adventures that  a career in Conductive Education has afforded me - but this time I didn't just follow my whim and do what suited me in the moment.  I uprooted a wonderful husband, a person whose happiness and well-being I feel inherently responsible for, a person willing to leave a life that he loved to support me on a journey that I wanted to take, and have watched him struggle to settle in and find his feet and his happiness.  I romanticised the adventure we were going to have together, and actually assumed it would be easier to jump chapters with him instead of on my own and didn't prepare either of us for the roller-coaster ride and bumps along the way.

I also romanticised the job I was coming into, an established adult CE centre, working with two conductors I liked and respected, in a place that I have always wanted the opportunity to explore.  I didn't allow myself to think about things like the subtle but very relevant distinctions between Kiwi and Aussie culture, let alone the culture shock of jumping into established groups that have been running very well without me for years thank you very much, or about having clients who have had years of conductive experience that hasn't included me.  Some of the adults here have been around CE longer than I have - in my professional experience, every group I've run, every client I've had since my student days and other than during my hiatus in Norway, has been a person I've introduced to CE and a group that I have set up and run (with mentorship and guidance) my way.  I have had to learn, adjust, adapt - as have my new clients and colleagues and it has not been an easy ride.

I've also come into an organisation going through change - in fact I am part of that change and the associated discomfort, and worse yet I'm causing some of that discomfort.  I now understand that part of my roll is actually going to be conducting this organisation through change and I am going to have to work hard to learn how to do that.  In other jobs and in other organisations where there has been change, I've had to learn to roll with the punches and have had to learn to fight back where necessary.  I've learned that if change is a wave crashing over you it is hard, so you have to either learn to ride the wave or to choose to get out of the water, but now I'm part of the wave instead of the surfer and to be honest it is really hard to learn how to be a more gentle wave -- it has never been my style and it will have to be my style if I'm going to be any good at my job here.  And that, in itself, is overwhelming, and I hope I am mature and ready enough to change myself.

So three months in to this new chapter I'm still settling in.  But I notice myself composing blog posts in my head, on the train as I head home from work, on my notepad and emailed to myself as reminders of things I want to think about and write about.  I'm trying to keep my head up, to be excited instead of overwhelmed, to count gratitudes instead of raindrops, and to find my feet -- and hopefully my voice too.

The Winds of Change

Ready for some stream of consciousness and random thoughts?  I figured I'd better warn you that this is going to be one of those blog postings...

The winds of change are blowing -- I can smell them, I can taste them, and my skin prickles with anticipation as the familiar winds gentle tug at me.  C'mon Lisa; let's go they whisper.  I feel like a happy dog with his head out the window of the car, catching so many different scents and sensations, looking and sniffing around, not quite sure where to look or what smell belongs to what.  Like a kid at an amusement park overstimulated and excited but not sure which ride to go on next.

So many of my big decisions in life, especially in my professional life, have been made by me being privileged enough to be able to act on amazing opportunities that have popped up at perfect times; volunteer here, go to school there, take a job here.  Over the past few years I have been more active in creating these opportunities for myself -- I love what I do, how can I create a work environment that works for me, this isn't working, try this, tell the universe what you want, give more than you've got, put it out there, and try not to be too surprised when once you've put it out there it seems to happen.  I said I feel like a happy dog with his head out the window -- I have had a very good few years out here on my own, working for myself, living the dream, a successful business, a diverse and rewarding practice.  I'm happy, I'm fulfilled, but I can smell these winds of change all around me, I can feel them teasingly messing my  hair as they mess with my mind.  And they've been blowing for a few months now.  C'mon Lisa; let's go.  Where? What? Why now, universe, I'm happy?


Some interesting and tempting job offers -- including an opportunity to work alongside AJ, an amazing conductor and friend whom I love and respect.  But the timing hasn't been right; the path hasn't been clear for me to grab these opportunities and run with them.

I've just had a few weeks off, a wilderness camping trip in the Canadian Rockies with my partner in crime AR, a few weeks at home with my family.  The plan was to come back with a plan for what next.  But AR, and the mountains, and my niece were all a bit distracting, AR in particular, who totally threw me off guard by proposing!  And now I've come back, and am trying to settle in but that wind of change is flirting with me.

There has been stuff and politics going on at the gym where I'm based and though it hasn't affected me directly I'm looking at other places where CE and my business (Transformations: Personal Training for Every Body) can better flourish.  As scheduled, the Enable Me research project will come to an end in December so I will have time to move in different directions.  I would like to remain allied and to work in support of Fighting Chance -- though they have shifted focus away from funding private intervention they remain committed to CE and their new ventures are nothing short of jaw droppingly awesome.  And the NDIS promises to radically reform the disability service industry in Australia.  And, an old comrade (JB - the manager who hired me to come out to Australia back in 2003) called to give me some important news -- CE run by conductors will be funded by the "Better Start Early Years" funding initiative -- seriously?!?! -- government funded CE in Australia?!?! totally out of the blue awesome again!  The entire document is worth reading but if your attention span prefers, the CE mention is on page 9:  http://www.fahcsia.gov.au/sa/disability/progserv/people/betterstart/Documents/operational_guidelines_spp.pdf

I only have vague understanding of the implications of these opportunities; I have ideas; I can see the forest but I'm one for counting the trees and the whole picture and the details are just not there yet.  And as patience is my missing virtue, it is hard to sit back and let things fall into place, especially when that wind is blowing; like I said, a happy dog, with his head out the window, sniffing out opportunities.  Like a kid at an amusement park, excited and overstimulated, ready to get off of this ride and onto the next but not patient enough to wait in line.  C'mon Lisa.  Let's go.

"This indecision's bugging me..."
--The Clash