Status: Back from Montreal

I had the great opportunity to attend the Third World Parkinson’s Congress in Montreal the first week of October.  There were over 3000 attendees from over 50 countries, with a mix of researchers, clinicians, and People with  Parkinson’s.  I’m planning several blog posts to digest what I learned , but in the meantime, here are some nuggets:

My buddy, Diane

–Our Canadian hosts had an excellent idea of matching you up with a “Parkinson’s buddy”, someone from Canada who was at a similar stage in the disease.  I was matched up with Diane Daignault from British Columbia, and really enjoyed meeting her and her husband and comparing notes.

— Alpha-synuclein was the darling of the conference.   This bad-boy protein keeps coming up in research.    Alpha-synuclein (a-syn to its friends) appears to block cleanup of protein in the cell and ultimately damage the dopamine neuron.  Look for a future post about this.

-Non-motor symptoms was another buzz throughout the conference.  If you know anything about Parkinson’s, you think of tremors (motor symptoms).   But non-motor symptoms (everything from constipation to depression to drooling) actually appear earlier than tremors, and may provide biomarkers for early detection.   At last I have an explanation why I frequently sweat at meals!  Look for a future blog post.

–Speaking of non-motor symptoms, I found this stunning: per presenter Blair Ford, 43% of  People with Parkinson’s (including me!)  report having a frozen shoulder at some point  prior to PD diagnosis.

–I learned a lot about challenges with drug trials.  (See future blog post.)  For starters, the average drug development takes 15 years and cost $1.2 billion – this has got to change!  (Per presenter Fabrizio Stocchi)

Parki the Racoon (too cute!)

–You can’t have a Parkinson’s conference without inspirational speakers.  One of them was Bob Kuhn, Canadian blogger, who writes “Positively Parkinson’s” .  This guy is pretty amazing  He did a multi-country bike ride to publicize PD awareness.  He came up with “Parki, the Raccoon”as a means of communicating with his grandson while he was traveling, and subsequently has used it as a fund-raiser, to provide travel grants to the World Parkinson’s Congress for Third World researchers and patients.  He is a lawyer by profession and recently took on being interim president of Trinity Western University in his native BC.

–Bob Kuhn talked about the use of the personal pronoun  and urged us to  “get out of yourself.”  He noted that “Illness” starts with “I”, but “Wellness” starts with “We”

—From Peter Davison, who approached his young-onset PD diagnosis with a clown nose (literally), he quoted Victor Frankl who wrote about how it was possible for anyone to make it through the concentration camps: “They made it because they had something beautiful left to do in their lives.”  (This makes me focus on what’s “something beautiful” I have to do.)

–More inspirational speakers:  Alex Flynn  does marathons constantly, despite his PD diagnosis.   He didn’t expect everyone to run marathons, saying,  “We all have our own little Everests.”

–Soania Mathur  was  diagnosed with young onset Parkinson’s at 27, while she was pregnant with her first child, and starting residency after med school.  In her inspirational speech, she said, “At some point you have to abandon your fear of the future in order to begin living your  present.”

–And last but not least on the inspirational roster, Rich Clifford was an astronaut, and  actually flew a mission and walked in space AFTER getting PD diagnosis.  NASA was aware of his diagnosis, but not his teammates.  He said, “Don’t give up.  There’s many more important things in your life than Parkinson’s.   You’re just moving to a different phase of life.   Life is better than the alternative.”

— Smoking is good for you!   Yes, really, nicotine caused a reduction in L-dopa-induced dyskinesias  {involuntary movements, like what you see with Michael J. Fox.)   Smoking and coffee are even better!  Maryka Quik of SRI (Stanford Research Institute). who presented this research, hastened to warn not to start smoking!  She also hastened to add that “correlation does not equal causation”.   Nevertheless, the Michael J. Fox Foundation is funding research on various nicotine patches to see if they will work to reduce dyskinesias  without the smoking side effects.

–Oh yes, my status….?  Fine, now that I’m home.  The conference kept emphasizing exercise, but ironically it was difficult to get much exercise when you were sitting all day listening to the excellent presentations.

About Laura Kennedy Gould

Author of "The Magic Trick -- Life with Parkinson's
This entry was posted in Parkinson's Causes, Parkinson's People, Parkinson's Research, Status, World Parkinson Congress and tagged , , , . Bookmark the permalink.

6 Responses to Status: Back from Montreal

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  6. Lucy Kennedy says:

    Great summary!

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