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Sunday, January 31, 2016

Partners in Parkinson's

Yesterday, Jan 30, 2016, my Wonderful Husband and I got up at 4:20 am, left our home in Yuma, Arizona at 5 am and drove 185 miles (300 km) to attend the Partners in Parkinson's event in Phoenix. 

We have been to many Parkinson's disease conferences over the years and have even helped plan some in our own hometown, so why get up early and drive so far to attend yet another one? This event was being sponsored by the Michael J. Fox Foundation and I wanted to see if it would be different. I was also hoping to see some Parkie friends.

When we got inside, one of the first people I saw was Carl Ames. He was staffing the Davis Phinney info table. As I looked around, I noticed there were no pharma or Medtronic tables. The info tables were for PD foundations, speech, occupational and physical therapy providers, exercise & wellness programs, research facilities and other resources for Parkies. 

We got checked in, got some breakfast and went to find a seat. The place was packed. They announced later that this event had the highest attendance so far, over 1100 people!

The event started with a moderator, Dave Iverson, a nationally known journalist who has Parkinson's himself. He interviewed three local people with
Parkinson's on how & when they got diagnosed, and how Parkinson's has changed their lives since. One of them was Brian Baehr, who I met several years ago, at a Davis Phinney event. Brian believes that exercise and challenging himself has helped him a lot. Another one was Jean Burns, a humor blogger like myself, and an ambassador of the upcoming World Parkinson's Congress in Portland, Oregon (Sept. 20-23, 2016.) I met Jean several years ago as well. The third person was new to me, but like Jean and Brian, refused to let Parkinson's beat him. The audience members were encouraged to write down questions for them. 

The next session was a re-enactment of an appointment with a Movement Disorder Specialist using a recently diagnosed man, his wife and a Phoenix area physician named Holly Shill, MD. Since many people with Parkinson's are treated by their primary care physician or a general neurologist, this session gave some insight as to why seeing a Parkinson's specialist could be beneficial. A short break was taken after and many people went up to speak to Dr. Shill. I introduced myself to her and was surprised when she said "I've heard about you from my patients."

The next session was Dave interviewing three people directly involved in research. We learned about potential new therapies in development and some trials that ended in failure (CoQ10 and Glutathione.) They all stated the known fact that so far, there is nothing out there that can slow down, stop or cure the disease and warned people not to be exploited by hucksters proclaiming a cure. Many clinical trials end abruptly because the people taking the placebo (sugar pill) show the same or more improvement than the ones who actually get the therapy being tested . Why is this? It is because just thinking that something will work, can cause your brain to produce more dopamine. This extra boost can make it seem like it is working, but unfortunately, the effect doesn't last. 

The event had a very patient centered format. There we no physicians using big fancy words, no complicated slides designed to impress other physicians. Just a Parkie interviewing people who answered in terms everyone there could understand. They weren't pushing drug A or a particular surgical intervention. They talked about all the various choices of symptomatic relief, but just in general terms. In my opinion, Dave Iverson did an excellent job of moderating this event. He asked the kinds of questions that I myself might ask if I was ever given the chance to speak to these type experts.  

They provided us with a tasty lunch and because of the long drive home, we left right after the next session, which was how to go about getting a team together to help you navigate this journey. On our way out, we saw Mick. Mick met us in the hospital cafeteria the day before my DBS surgery back in 2012. Mick &  I have been online friends for years, but rarely see each other in person, except at Parkie events. It was nice to see him looking so well. 

I gave out a few cards promoting this blog, and we headed back to Yuma. We got home just before dark. If there is a Partners in Parkinson's event near you, do yourself a favor and go. You might learn something, meet some nice people or find a new Doctor. If you go, be sure to tell Dave Iverson that YumaBev says hi.  

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