A week later, after the WPC

 

The World Parkinson Congress was much more than just a convention.  It was an opportunity to meet and mingle with a diverse group of people who all have the same mission:  finding a cure for Parkinson’s.  There were so many options for all of us.  We could go to medical research sessions, even if they were geared towards reseachers.  Doctors came to exercise sessions with People with Parkinson’s (PwP’s).  Sessions were labeled by how technical they were, but they were open to everyone.  The exhibit hall had a huge variety of vendors, ranging from Parkinson’s organizations, to drug companies, speech therapists, a boxing ring and even one vendor touting a mattress to cure all ills.  There were hundreds of posters, a staple at medical meetings, which outline the latest research and studies from around the world.  Some were by researchers.  Some were by PwP’s.  Themed tours of the posters were offered for the curious.

So where am I a week later?  Still trying to digest all that I saw and heard.  Fortunately, the WPC app has links to the speakers and their slide presentations.   This is very helpful if you can’t quite remember the details, or missed a session that you wanted to attend.  The key thing is that now, thanks to the program guide which has info on every session and every speaker, I know where to go for more information on so many topics relating to PD.

The big take-aways from the WPC for me are:

  1. PD is a Designer Disease.  The symptoms and progression for each PwP is different. Doctors are now looking at other ways to alleviate symptoms, including alternative medicine, exercise and nutrition.  As we learn more about our genes and PD, the challenge will be how to move forward with that information to get the best treatment possible.
  2. We were inspired by so many:  Tom Isaacs, Brian Grant, David Leventhal and Julie Carter just to name a few.  They have all made our lives better in some way.  And of course, who was not brought to tears by May May Ali,when she recited her poem “Pearl”, in memory of her father Muhammed Ali.  Finally, we were inspired by so many People with Parkinson’s who made the journey to be together in Portland.
  3. None of us is alone on this journey with Parkinson’s.  There is support for us in so many ways.  Doctors and other health care professionals, therapists, trainers, caregivers, friends with PD, are all there to help.  I met people that I had corresponded with through this blog, finally putting names and faces together.  And I met people I had read about, all of whom were eager to share their wisdom and their help.
  4. This is a global community.  There were people from many different countries, including PwPs, Caregivers, Doctors and Researchers who are all working together to find a cure and make life better for PwP’s.
  5. Meeting authors and hearing about their books.  Jon Palferman, one of my favorites, spoke about Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, one of the best PD books I have read.  Alice Lazzarini talked about her transition from cutting edge PD researcher to Person with Parkinson’s in her book  Both Sides Now: A Journey From Researcher to Patient.  I am looking forward to reading that next.
  6. We must advocate for ourselves to get the best care that we can.  Everyone I met has a story about misdiagnosis, wrong medications and bad doctors.  We, as People with Parkinson’s do have a voice, and even if it is a soft voice, we can and should be heard.

 

Here are a few of the posters and some photos

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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.”