Twitchy Women get Creative

On Sunday, our Los Angeles Women’s Parkinson’s group, now known as Twitchy Women, met to explore creativity in People with Parkinson’s.  Many of us have found new creative outlets since our diagnosis, doing things we never thought we were capable of.  This has been documented many times in the Parkinson’s literature.  So we thought it would be an interesting way to spend a Sunday morning.

We began with drumming.  One of our members, Naomi, has been going to Japanese drumming classes.  She brought many improvised “drums” which were distributed to the group.  She begain by using sticks and tapping them to “Hello, my name is Naomi”.  Each person introduced herself in the same way.  And then the fun began. starting with one person tapping a background beat, and others joining in one by one with their own beats.  According to Naomi, the benefits of drumming can be physical, especially if you use big Japanese drums, and mental as you mirror other drummers, repeating their beat sequences and creating your own.

Amy Carlson has been making videos as a creative outlet.  And, she has been dancing.  As someone who never danced before, she was surprised that modern dance was something that she could now do, and do well.  So well that her dance instructor invited her to participate in a show, which Amy thought was a recital.  It turned out that the show was actually a professional show.  She showed several videos of herself dancing, and using her PD movements as part of the dance.

I talked about writing, something I never enjoyed doing before PD.  It began when my Psychologist suggested that I write my narrative.  I explained to the group that when you start, just write what you feel.  Don’t worry about what you learned in 8th grade grammar.  Just write.  You can always go back and make changes.  Writing can be very therapeutic and you can learn a lot about yourself.  I tend to write stream-of-conciousness when writing for me.  It is a way to write quickly and with a purpose.  There is no set structure, but editing later can pull the pieces together into a cohesive narrative.  I shared with the group an article that I found about writing your narrative that works well for this type of activity.

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Jen and her card

A mini-art workshop was led by Clara, who has been making art during her sleepless PD nights.  She shared some of her artwork with the group and then we got to work making our own greeting cards, using many different things that Clara brought for collages.

Finally, Tricia Lowe has been writing poetry about life with Parkinson’s.  I will leave you with her poem:

May you always have enough

Enough happiness to keep you content

Enough faith to keep you strong,

Eoungh hope to keep you happy

Enough failure to keep you humble

Enough success to keep you eager

Enough friends to give you a sense of community

enough wealth to meet your needs

Enough truth to banish depression

Enough determination to make each day comple

Even better than last week

WPC Day 1

It’s liberating.  When the dance class is going on, there are no patients.  They are dancers

David Leventhal

Day one dawned bright and early.  First sessions at 8:00 am.  I got there at 8:15 and could not get into the yoga session.  That was indicative about most of the day.  Many sessions were standing room only or closed because there are so many people attending the WPC.  That is a good thing and a bad thing.  It is amazing that so many people came together for 4 days of learning, experiencing, networking and more for a conference on PD.  There are People with Parkinsons, Doctors, PT’s, OT’s, researchers, care givers, writers, all going to sessions together.  Some are very technical, others are just fun.  There is something for everyone.

However, it became apparent that with all of the careful planning, there just wasn’t enough room in many of the sessions for all of the people who wanted to get in.  I really wanted to go to the session on Nutrition and PD, but so did a lot of others.  Those who were lucky enough to get in said the session was excellent.  The good thing is that many of the sessions will be available on the WPC website for viewing later.

So what did I go to today?

First, at 8:00 am every morning, there are Hot Topics.  4 short presentations about current research.    Moving through Glass was presented by David Leventhal from Mark Morris Dance and the Dancing for PD program.  Using Glass technology, Leventhal developed a program to provide a hands free way of providing content.  It is easy to use, portable and private.  It gives people the option for tactile and verbal inputs.  Music and audio cues are used to get people going.   There are 4 modules:

  1.  Warming up the body
  2.  Balance – moving in space
  3. Gait training
  4. Unfreezing

Initial user evaluations were generally positive.  64% would recommend it to others and would use it.  All felt the exercises should be longer.  Right now they are limited by the technology.  The program is enjoyable and extends class benefits.  However, it is not a replacement for live experience and it still needs some improvement to integrate the technology better.

Leventhal was then presented with and WPC award for Distinguished Contribuitions to the Parkinson Community for his work with Dancing for Parkinson’s.  In accepting the award, he said that “It’s liberating.  When the dance class is going on, there are no patients.  They are dancers”

There is a wonderful photo exhibit titled “This is Parkinson’s” by Norwegian photographer an20160921_095559d PwP,  Anders Leines.  There are many compelling portraits with personal stories.  I posed with a friend, Clara Kluge, in front of the large group mural.  You can see for yourself how amazing these people are in the photo.

I attended a session titled “Living Well with PD:  It starts at Diagnosis”

Three speakers spoke about how their lives changed forever when they were given the diagnosis and how they coped.   A lot of good quotes came out of this session which was really about getting past the initial shock of the diagnosis and keeping positive about the future.  Bob Kuhn says the challenge to coping begins with 3 words:  Engage, Encourage and Inspire.  His best quote came from Dory in Finding Nemo:

“When life gets you down, you know what you gotta do? Just keep swimming, and swimming and swimming…” 

Jane Busch gave a framework for self-care.  She began by going through the 5 stages of the emotional roller coaster after diagnosis:

  1.  Shock.  I have what????
  2. Denial.  Not me.  It must be a mistake
  3. Anger.  It is not fair
  4.  Fear.  what will happen to me?
  5. Acceptance.  Ok let’s get on with my life.

She describes 5 keys to live by:  Nutrition, Supplements including Vitamin D and Calcium, Exercise, Mindfulness and Volunteering.

The third speaker, Dilys Parker, spoke about the importance of communication beginning with the first visit to the doctor.  Telling your story can be therapeutic and can be helpful to others as they listen to your story.  She gave us the best quote of the day from Joan Didion’s The Year of Magical Thinking:  Life is changed in an instant  The ordinary instant.”