A Privilege…And An Honor

My end of the conversation goes something like this: “No!…no!…yes!…but I haven’t done anything…wow!…thank you…what an honor!…o.k….I’ll keep going…

My end of the conversation was in response to having received a call from Hayley Carpenter, Deputy CEO/Advocacy, with the Parkinson’s Action Network. “I want to let you know that you have been chosen to receive the Murray Charters Award to be awarded at the PAN Forum in Washington DC in February 2013. [Murray Charters Award for Outstanding Service to the Parkinson’s Community] My response, as crazy as it may sound was, “No, I haven’t done anything!” Her response was that yes I had done much for the PD community, not only with the Parkinson’s Action Network (PAN), but on a broader scale in my work with the Parkinson’s Disease Foundation’s Parkinson’s Advocates in Research (PAIR) Program and the World Parkinson Congress. Hayley went on to say that my accepting this award didn’t mean that I was done and that I could stop doing what I’ve been doing as an advocate. I promised her that I wouldn’t.

As with all of the advocates around the world working for Parkinson’s Disease awareness, education, and seeking the best quality of medical care for our PD family, what I have done, continue to work on , and will do in the future, is not done for personal recognition. Being out in the public domain brings about the good, along with the frustrations of speaking out for those whom don’t have a voice. The tone and the texture of the message has to be tempered when things don’t go our way or don’t go as expected. Receiving recognition from the Parkinson’s Action Network gives me hope that the message is being heard and inspires me to keep the message moving forward.

I consider it a true privilege to be an advocate for Parkinson’s Disease awareness and education, and consider it my life’s work. The bar has been set high by the people with PD that have gone before us to make the voice of the PD community heard. Perry Cohen, Linda Herman, Peggy Willocks, Paula Wittikend, among others in the U.S. are the ones to thank for their never-ending work. They have been my mentors in the cause to make a difference. The urgency in finding new treatments and a cure moved to a higher level when Paula Witikend, whom lived with PD for over twenty years, passed away in the latter part of 2012.

In my work as an educator during the last two decades, all the credit goes to my students when they do well. When they don’t do as well as I expect, I take that as a challenge to re-focus and find the best way that they can learn in order to be successful. What I do within the advocacy community falls in line with my educator thinking. I applaud the efforts of advocates around the world whom are working hard to do make a difference and are being quite successful. I also accept the challenge to connect advocates from all walks of life in collaborative efforts. The exciting part of all of this is that there are some outstanding PD advocates who will move research forward even faster and results out quicker in order to, at the very least, enable the PD community to benefit from better treatments.

As with all things in life, I realize that the privilege that I’ve been given to speak out on behalf of the Parkinson’s community has come with the help of many people. My wife Chris, daughters Amber, Ashley, Alisha, and grandson Landon continue their efforts to make a difference in the lives of people with PD that they meet along the way. I’ll accept the award on their behalf for doing what they do to help the PD community and allowing me to do what I do.