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 Opening Night

This is a tremor free zone.  You are free to shake and shuffle as much as you want

Jon Stoessl MD, WPC 2016 Co-Chair

 

Over 4300 people, from 67 countries, gathered this evening at the Portland Convention Center for the kick-off of the 4th World Parkinson Congress 2016.  The program began with the Parkinson’s Choir, who rehearsed via the internet.  They were very impressive.  And they certainly didn’t need me ( I am tone deaf when it comes to singing).

Dr. Jon Stoessl and co-chair  Dr. Serge Przedborski greeted the crowd, saying that  we are all here for the same reason, to learn new knowledge with people who share the same goal – to find a cure for Parkinson’s.

Former NBA Basketball player, Brian Grant was inspirational.  When diagnosed with PD, he made a commitment to help others through his foundation.  He said “I fight knowing I can win.  I don’t stand alone.”  He then introduced the winner of the video competition, Lori Campbell, whose video Victory is about putting together a toolbox to fight Parkinson’s, which was based on a suggestion by a health care professional.

May May Ali, daughter of boxing great, Muhammad Ali, wowed the crowd by telling her father’s story and then recited a beautiful poem “Pearl” which she wrote about her father.*

The last award of the evening was the People’s Choice Award, which was for the video Dance Through Life by Dr. Rafi Eldor from Israel.  The video shows how he fought the stiffness and other symptoms of PD with Ballroom Dance and eventually created dance programs all over Israel for others with PD.

Lot’s to see and learn tomorrow.

  •  “Pearl”
    By Maryum “May May” Ali

    What a hero he is to me but more so heroic in the face of adversity.
    Lightning speed within a square ring turned into slow imbalances while praying for nights like yesteryear spotlights on
    The Ali Shuffle.

    The rope-a-dope fight is now a rope-a-dopamine battle.
    Parkinson’s – akin to traversing upstream in a canoe with a leaking hole without a paddle.
    Yes, it is a struggle, but what I admire about my father is his determination to not let symptoms defeat his soul and refusing Parkinson’s to retreat him into darkness taking its toll.
    Throughout diseased phases, he maintained divine praises to his Creator,
    and I witnessed in the early stages his ability to still raise his once powerful fist despite recurrent shaking.
    That shaking.

    Reminds me of the famous Cassius Clay quote after Sonny Liston choked, “I shook up the world!”
    Yes, Dad, you are a pearl imbedded in the oyster of life, protected by your faith and elevated through social strife.
    Standing up for the right to be the man you manifested.
    Politically unrested, you tested all waters until the tides waved your way to whisper in your ear,
    “You know God’s humanity.”

    Now you stand with a walker. No vanity.  Now a softer talker if you talk at all.
    But what remains the same is your spiritual stance, a presence remaining tall.
    I am so inspired by your choice to live your life to the fullest it can be
    with over 30 years of PD riding heavily on your back.
    From your earliest days to your latest, you haven’t wavered your love of self.
    Your eyes still sparkling like the day you proclaimed,
    “I Am The Greatest!”