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.