The PD Southern Symposium and Victory Summit

We had a wonderful time in Spartanburg SC at the Parkinson’s Disease Southern Symposium.  I have tried to summarize what went on during this three day event below.   Thanks go out to Lisa Cox, Linda Morgan, Ken Cater and Bill Wilkins, the team that conceived and planned a very successful event.

The first day consisted of opening ceremonies followed by exhibits and lunch at the Spartanburg County Library, a dance class at Ballet Spartanburg Studios and a screening of the documentary Capturing Grace by Dave Iverson.   On our walk over to the library we met Steve Quam who has bicycled across the US 3 times (and motorcycled once) since he was diagnosed with PD in support of the Davis Phinney Foundation!   He is also a musician and provided music before lunch was served.

Capturing Grace by Dave Iverson is an inspiring film which followed a group of PwP’s in Brooklyn as they trained for and presented a ballet/dance production.  Watching the difference dance made in their symptoms was fascinating and the finale was great.  I highly recommend you see it if you get a chance.

In the evening we attended a talk by Bill Geist, CBS Sunday Morning Correspondent and PwP, also sponsored by the Spartanburg County Library.  He spoke about hiding his diagnoses from family, friends and co-workers for several years, finally ‘coming out’ on the show. We finished the busy day with a dinner where our panelists from the Atlanta Partner’s in Parkinson’s meeting were reunited.  We enjoyed catching up with India Pender Martin during dinner.

After dinner Colonel Michael “Rich” Clifford, former astronaut joined Bill Giest at the podium to discuss living with Parkinson’s.  Colonel Clifford was diagnosed with PD at age 42 but was cleared to fly by his NASA commander.  He flew one more mission which included the first American spacewalk while docked to the Russian MIR space station in 1996.  The historic space mission is the subject of a documentary called “The Astronaut’s Secret” which explores his career as an astronaut and how he and NASA kept his disease a secret for more than fifteen years.

Day two included time to peruse the exhibitors, a Support Group Luncheon hosted by the Parkinson’s Association of the Carolinas that included more music by Steve Quam, and a motivational presentation by  John Bauman on the topic “Inspired by Parkinson’s: How to Have an Amazing Life in the Face of Life-Changing Events”.

We also heard from Dr. Michael Okun MD, Director of the Center of Movement Disorders and Neurorestoration at the University of Florida.  He is a dynamic speaker and took questions from the audience about PD and finished with a quick summary of new research. Thanks to NPF who provided attendees with a free copy of his book “10 Secrets to Living Better with Parkinson’s”.

Our final activity for the day was to gather in the rotunda of “The George” a building nearby for about 45 minutes singing old favorites. It was a great hearing our singing amplified by the natural acoustics of the rotunda.

Day three was the Davis Phinney Foundation Victory Summit held at the TD Convention Center in Greenville, SC. The morning presentations included building your Parkinson’s Toolkit (eat right and exercise), the need for daily exercise (the only prescription with unlimited refills), cognitive change and non-motor symptoms (exercise body and mind to impact your mood and wellbeing), and research (sign up for Fox Trial Finder and participate in a clinical trial).  Each presentation was made by leading Movement Disorder Specialists and a Physical Therapist and were informative and on point.

After lunch Local Hero awards were presented to Lisa Cox and Linda Morgan for their PD advocacy.  This was followed by Moments of Victory, a presentation by Davis Phinney.  He talked about his diagnoses, how DBS helped his tremor and why he believes in celebrating moments of victory with his characteristic arms above the head in a V.  He pointed out we are a tribe and not alone in our fight against PD. It was an inspirational and motivating presentation that had the 600+ attendees on their feet, arms over their heads and ready to celebrate every victory.

We then attended a presentation on Medication Management and Strategies where we heard about the various medications used to treat PD symptoms.  The final session we attended was Clinical Trials: Propelling Research Forward a panel discussion about current research. One topic we discussed was the need for clinical trial participants to support ongoing research, a topic that I am passionate about.  Both patients and researchers recognize that changes are needed to the current process but that won’t happen overnight and in the meantime we need clinical trials and participants.  If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats our symptoms.  Okay I’ll get off my soapbox for now, but expect to see more about this issue in future posts.

So that was the Victory Summit, a full day of information sharing and motivating sessions that made you know we are not alone and that research continues in the search for a cure. I highly recommend attending the Victory Summit if you get an opportunity.  More information can be found on the Davis Phinney Foundation website.

Oh yes, I promised to mention my beer brewing adventure. I opened my first bottle of this batch today; it is a brown ale and was pretty tasty.  This was my second attempt and it went a bit smoother than the first try but it is a process that uses the kitchen for about 4 hours and most of the pots and pans in the house!

At the Victory Summit we reconnected with Claudia Marshall, Research Engagement Assistant at the Michael J Fox Foundation, whom we met in Grand Rapids.  We discussed the trial we are participating in and also how we can improve clinical trial participation. I’ll have more about that in the next post – see you then.