Friday, July 5, 2013

An Underaddressed Problem

I received an email from the Michael J. Fox Foundation on June 17, 2013 that addresses cognitive dysfunction, a problem that impacts many PWP's and, consequently, their families.  A couple from the Denver area who are board members for the Parkinson Association of the Rockies, Barbara and Lee Mendel, are featured in the email.  Linda and I recently had an opportunity to meet this wonderful couple.

I was interested to hear their story and learn more about their experience with Lee's cognitive dysfunction.  It was very helpful for me when I was first diagnosed with PD five years ago to sit down with a couple (May and Joe Hertel) who were willing to share their experience with me.  Now, as I sense my own experience which may end up leading to Lewy body dementia (LBD), I was like a sponge soaking up everything these kind folks had to share with Linda and me.  It seems that we established a friendship that day which will be important to us for years to come.

Barbara highly recommended that we read A Caregivers Guide to Lewy Body Dementia.  I ordered the book on Amazon and downloaded it to my Kindle.  Between our conversation with the Mendels and this book, I learned a great deal that was helpful to me.  While I would rather not have LBD, I am at peace with it.  In an odd way, all this has opened doors for me for which I am grateful.  I am hopeful that Linda will also find it to be helpful in the future.

Linda and I will be going to the World Parkinson Conference in Montreal (October 1-4, 2013) so that I can participate in the PDF (Parkinson Disease Foundation) PSG (Parkinson Study Group) program annual meeting just prior to the start of the WPC.  I had been invited by PDF to be part of the neurosurgery working group (an honor I would otherwise have accepted), but another group caught my attention. I managed to wrangle my way into the cognitive/psychiatric working group meetings, which are highly interesting to me.  I am hoping that I will be able to provide a "patient perspective" that will be helpful, as well as some specific ideas for research.