Sep 22, 2016

If you haven't been to the World Parkinson Congress boy are you missing out!

WOW is the word that comes to mind when asked to describe what it's like to be at the World Parkinson Congress here in Portland, Oregon.  Was it worth the 5895 km trip to spend the week with over 4200 people from 67 countries either living with, caring for, involved in, researching or treating Parkinson's Disease?  Absolutely & without question.  AND it's not over yet!!!

I arrived in Portland on Monday evening.  Technically today (Wednesday) is the first official day of the Congress, however I was here for "Day 0", the pre congress.  I will admit my head is already spinning with still two days to go, the information is overwhelming not because the content is extreme but rather there's sooooo many choices for what you want to learn about.  In fact I have myself wishing I had a clone or a travel partner so they could attend opposite sessions than I so not to miss out on any valuable information.
The opening ceremonies were truly mind blowing and I found myself fighting back tears at every turn.  Not because anything about it or any of us Parkies is or should be considered sad but rather that it's so incredibly powerful and inspirational.
The Parkinson's community is tight knit and like no other, the genuine care, concern support & love for one another shines through.  The amazing Parkie's out there with stories of hope, courage, strength, determination & how they find joy in their journey with PD is truly incredible.  The experience is difficult to put into words, other than to say it's empowering, inspiring and very emotional all at the same time.  Brian Grant, former NBA player with Young Onset Parkinson's spoke at the opening ceremonies and he was more admirable with every word he spoke.  I'll write a bit more about him, his foundation & life with PD at a later time, so stay tuned.  We were also in awe when the beautiful Maryun "May May" Ali took the stage with confidence, enthusiasm, honesty & grace.  She spoke of her father the great Muhammad that the Parkinson's community admired and sadly has lost and his personal PD journey.  How he was all about time, and how precious it is.  She spoke of his love for magic and how he would perform his magic tricks as much as possible.  But most importantly she spoke of his courage, his fight and his positive personality towards life & Parkinson's Disease.  I think it would be impossible for there to be a person in the room that wasn't inspired by her address as well as Brian's. 

I also had the great pleasure to meet some other inspirational Parkies.  People who fight every day, encourage others with PD to do the same, challenge, motivate & inspire the entire community.  And I must say aside from how amazing the content is of the various sessions (and there are a ton to choose from) meeting these people who share in the same battle although of various degree's and symptoms as we are all different, is an experience just as if not more rewarding than the congress overall.  It's truly a remarkable experience one I will never forget and cannot urge you all to think about attending next time.  Which by the way will be in Kyoto, Japan in 2019! 

For instance this evening while attending an incredible film night that showcased short films from all over the globe and how people are facing PD head on, I had the pleasure to see the entire story of and meet Andy McDowell.  Andy created a video submission for the last congress called "Smaller" which was one of the first things I showed my oldest daughter Samantha after being officially diagnosed.  I thanked him for that and for his courage to speak up and spread awareness that some of us affected with PD have small children and are not 'old'.  And although not better or worse or in any way meant to compare with someone who is older and their challenges, ours are simply unique when we have little people to care for ontop of it all.  You can view his poem here:  And his film "Switched On" can be found:

Tim Hague Sr. was the Emcee for film night and you may recognize his name as the fellow from Manitoba, living with Parkinson's and the winner of season 1 of the Amazing Race Canada!  He's also a fellow WPC Blogger and it was an honor to meet him in person this evening.  I hope to get a chance to speak with him again before we both head back to Canada.  You can check out his blog & some video links here:

I saw this man's video before one of the sessions this afternoon for the first time.  It was amazing, it came in 2nd place for the video submissions.  This man is Superman for sure!  Living with PD I believe he said 14 years now and rocking it!  He said many years ago his young son told him that he was Superman and Parkinson's was his kryptonite.  He fights everyday and is inspiring people myself included all over the globe!

The beautiful Soania Mathur.  Mother, Wife, Physician, Author, Educator, Ambassador & person living with Parkinsons.  I was honored to have her sign her book I brought along with me.  Ironically she's not only amazing and a Canadian but my family Doctor who thank heavens never gave up on me until we got answers on why my body was broken and her are good friends.

 WPC Blogger and friend Laura Kennedy Gould, Blog: "The Magic Trick - Life with Parkinson's"

For more photo's and information from the Congress visit the A Broken Body's Journey Facebook page at:

And sadly last but not least.  My WPC Buddy suddenly passed away last week.  I was so incredibly excited to meet and hang out with him this week.  We started talking back in the spring and despite how incredible the congress is I'd be lying if I didn't say there was a slight bit of it being bittersweet.  He's been honored with a moment of silence I know his presence is here with all of us and I can say with certainty he is thought of often.  I attended the WPC Buddy reception without you both, shed some tears & wore my Dallas Cowboys hat in your honour.
Jason Arwine, thank you for the inspiration during the short time I knew you.  Enjoy dancing with the angels free of any of PD's struggles.  To you Heather, I'm so incredibly sorry and I still very much look forward to meeting you and hugging you tight.
 RIP Jason Arwine
December 12, 1978 - September 15, 2016

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