Partners in Parkinson's: Some Reflective Thoughts

I was fortunate enough to participate in two Partners in Parkinson's (PIP) events --- one in Boston and another in Philadelphia. My role was to speak in the opening panel, "The Many Faces of Parkinson's." After that gig was accomplished, I stuck around at both events and took some notes through Google Glass (awesome!) or on a legal pad (gross, paper is for old people!). Here they are presented in no particular order.

• As a patient, it is critical to see a Movement Disorders Specialist.  I was surprised to hear how many conference participants still simply saw their family physician or the local neurologist. For numerous reasons, the first being your health, please consider adding a MDS to your support team.

• Speaking of support team, it is a good idea to assemble one but do know that you have to be the CEO of this organization. The team can consist of your MDS, physical therapist, nutritionist, etc. but you will need to coordinate these efforts. Think of it as a rapper with his entourage--just make sure that you are on top of your posse. 

Kanye understands the value of a support team

• This is an impressive undertaking by the Michael J. Fox Foundation. One could argue that public health campaigns are beyond the initial scope of the Foundation's mission but, as we move forward in the delicate dance to a cure, it is obvious that awareness and knowledge are linked to strong research and robust clinical trials.

• Many individuals came up to me after the first session was finished and asked more personal questions. Sexual health seems to be a hot topic. I would be happy to write about this except that I am a conservative WASP from Eastern Long Island.  We tend not to be the most open people about our sex lives--- unless it is forcibly revealed by a newspaper or court case. With that in mind, I may ask one of my colleagues-a sex therapist-to write a special column on the subject.

• Inspiration comes in many forms and I am always energized after engaging with the broader Parkinson's community. There are so many smart, motivated people in this effort that I'm convinced we cannot lose.  Unlike many diseases, Parkinson's is a challenge that serves as an overlay to your life but not necessarily one that can end it. Given the nature of the illness, it allows for advocacy, philanthropic engagement, and research participation among those afflicted with the disease. Ironically, the way the disease progresses is also going to eventually lead to its eradication. You cannot leave this many talented people that much time to fight--we will eventually win.

• These events are massive undertakings--I equate it to planning and executing a wedding in a different city each week. A truly excellent job was done by the Michael J. Fox Foundation staff in mounting these public health events. We tend to think of organizations as resource rich behemoths but in actuality, everyone on the team needs to pitch in. There really is very little inefficiency at the Fox Foundation and I, as an academic dean, am an expert in bureaucracy and wasted time and money. At the Philly event, Deborah Brooks, co-founder and executive vice chairman, served as hostess while Maurizio Facheris, Neurologist and Movement Disorder Specialist, handed out tote bags. The dedication of the MJFF staff is truly remarkable and I think if a career in medicine doesn't work out, Dr. Facheris would make an excellent casino greeter.

Iverson takes a coffee break to write the great American novel

• There are hard workers and then there is Dave Iverson---this guy does it all. Moderate just about every PIP event: check. Produce an amazing documentary: check. Prepare for the NYC Marathon: check. He sets the standard for the rest of us.

• I think the greatest takeaway for me was that information and continuing education concerning Parkinson's disease is key. I may not always want to hear every aspect about PD but, in actuality, the more accumulated knowledge that I have, the better life I will lead. Operating under the supposition that knowledge is power, these Partners in Parkinson's events are critical for the at-large PD community.