Topics for the WPC

The World Parkinson Congress is coming up in a year (Sept 20-23. 2016) in Portland, Oregon, an international gathering of people with Parkinson’s and the top research brains in the field.

Imagine if you were organizing the World Parkinson Congress –
–What topics would  you like to hear about?
–What research would you want to get the scoop from the world’s leading scientists?
–Who would you want to meet?
–What would you want to get out of the conference?

I asked these questions recently to a Parkinson’s support group.  I got some great ideas and would encourage my readership to send me your suggestions (via comments to this post).  I promised the support group I would pass on their topics to WPC organizers.

I have no idea if these topics will be considered.  But I figure it can’t hurt – it seems unlikely that all the programming is nailed down  this far in advance.

So here’s the ideas:
–What’s the distribution worldwide of Parkinson’s?  Do certain countries have more or less PD?  Why?  Do different countries  have different approaches?

A Kiwi I met at the last conference. His video went viral about what happened when he turned off his DBS pacemaker.

A Kiwi, Andrew Johnson, whom I met at the last conference. His video went viral about what happened when he turned off his DBS pacemaker.

–Give us a broader understanding of what research is happening internationally.
–Diet – does it make a difference?  (The support group has discussed paleo, Mediterranean, and other diets.)
–What is alpha synuclein?  Can you explain the “protein misfolding” that’s associated with PD?

Dr. Patrik Brundin, a leading PD researcher and expert on alpha synuclein. I interviewed him at the last conference and he'll be participating in the scientific updates.

Dr. Patrik Brundin, a leading PD researcher. I interviewed him at the last conference. He has just completed a podcast for WPC about alpha synuclein.

 

 

–Isn’t the cause of Alzheimer’s also some sort of “protein misfolding”?  Does Alzheimer’s research have any bearing on finding a cure for PD?
–Genetic component of PD – My dad has PD…so what are my chances?
–What’s the status of the theory that PD is genetic but triggered by environmental factors?  What environmental factors should we avoid?
–Stem cell therapy – what happened to the promise of this therapy?  Does it require fetal stem cells or can adult stem cells be used?
–Exercise – does it help?  Does it actually reverse the disease or does it just make you feel better?
–There’s so many organizations involved in PD research – who should I donate to?  Who gives the “biggest bang for the buck”?

Psst….many of these topics are going to be covered in WPC’s annual scientific updates, coming up this October 6-8.  Updates are free and online,but you do need to register at www.worldpdcoalition.org/webcast, which also has more info on topics and timing.  The webcast will be six sessions (over three days), and will also be available after the live webcast.

I also told the support group there would be a Dance for PD session(s?) during the conference.  I thought wouldn’t it be fun to have local live bands in a variety of styles.  I confess this idea came from hearing a great ragtime band from Portland during Seattle’s Northwest Folklife Festival.  (Check out Jacob Miller And The Bridge City Crooners on U-Tube –golly, those Portland folks can dance!)    I confess I am a ragtime fan and love to dance around in the morning to old ragtime records.  So I asked the support group what kind of music they’d like to hear at the PD Dance sessions.  Here’s what I got:  classical, folk dance / ethnic, country-western  (and of course, ragtime!).

Remember, send your suggestions for WPC to me via comment to this posting (before August 19, please).  No promises, but let’s see what happens.

About Laura Kennedy Gould

Author of magictrickparkinsons.wordpress.com "The Magic Trick -- Life with Parkinson's
This entry was posted in Parkinson's Basics, Parkinson's People, Parkinson's Research and tagged , , . Bookmark the permalink.

4 Responses to Topics for the WPC

  1. Lucy Kennedy says:

    Great ideas!

  2. Edmund Kennedy says:

    How about guided imagery, spiritual mind treatments, positive thinking, meditation, etc., all the left brain kind of stuff? I know it is a little outside your frame of reference but could be worth while.

    • Great ideas, Ned! Yes, PD is truly “all in your head”….

    • eli says:

      Guess what, the WPC 2016 will have a Meditation Room, just as we did at the WPC 2013. I hope you’ll stop in for some time to meditate and focus on nothing for a few minutes each day. The WPC 2016 will have plenty to distract your mind, it will be good to stop each day and shut it all off for a bit.

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