Thursday, March 22, 2012

Shaky Paws TV feature and interview

As previously mentioned, I was in Phoenix doing presentations for the Muhammad Ali Parkinson Center's support groups in early March.  The local Fox TV station sent a team to one of these to tape some of the program and interviews.  The feature was shown yesterday in Phoenix and can be seen online at

Saturday, March 17, 2012

New Beginnings

My wife and I just got back from a trip to Phoenix where I had the opportunity to do presentations in the Phoenix area to the Muhammad Ali PD Center's support groups.  The programs were organized by the Center's Margaret Anne Coles and Jill Wallace (an area representative for Medtronic, the sponsor for the programs).  On March 5, I spoke to about 80 people with the East Valley Support Groups in Mesa, AZ.  On March 6, I spoke to about 75 people with the West Valley Support Groups in Sun City West, AZ.  The local Fox network TV station recorded some of the program and interviewed me.  I should have a link that I can publish to this material soon, as they plan to run it prior to the week of March 26 in conjunction with a PD fundraiser.

At both of these presentations, I discussed a variety of information related to my ET/PD journey, deep brain stimulation therapy, my "new career" as a patient perspective PD advocate and author, my book and how I hoped it would help PD families.  I closed with a subject I called "New Beginnings".  It is rather personal, but I decided it might be worth sharing:

I sat in church recently listening to our pastor’s comments about Lent as an opportunity for New Beginnings as well as Endings (Lent marks the beginning of preparation for Easter and the end of Advent).  It is a time for reflection, taking stock, and rededication.  I had been subconsciously bouncing this concept around when I sat down to think about what I would like to say to you.

Late in 2009, I realized I was spending too much time worrying about my situation and did not have much peace of mind.  I decided it was time to reach out to try to help others.  I started a support group in my community and began to increase my involvement in other area support groups.  This was followed by requests for presentations, involvement in clinical research studies, the writing/publication of the book, and ultimately (again, with the help of PAR and Medtronic) the opportunity to take my patient perspective speaking involvement to a new level.  The book and my advocacy work has generated media interest beyond what I could have imagined.  Most importantly, I can honestly say that I feel that I am doing work that has value and that I was meant to do, which gives me great peace of mind.

I wanted to share my story with you to demonstrate what I did when I realized that I needed to draw a “line in the sand”, leave some things behind, and start fresh WITH A NEW FOCUS.  I would encourage all of you, individually and collectively, to reflect on where you are in your journey today and consider the possibility of a “new beginning” that resonates with you. 

This could be something that you undertake in your support groups by taking stock individually and developing possible goals for sharing with others.  Your ideas may help stimulate new possibilities for your friends and visa versa.  I would encourage you to think about things you can do for the “greater good” including participation in clinical research studies in your area (these are easy to find) or fund-raising events.  Or it could be something as simple as spending time with a friend, deciding to increase exercise (physical and/or mental) in SPECIFIC ways, or evaluating your home setup to reduce risk of falls.  I would encourage you to develop these goals with input from your caregiver and then “sleep on” them to ensure that they are actionable and realistic within the context of your situation.

I hope these comments provide "food for thought" relating to the importance of remaining physically and mentally engaged as well as goal-oriented.  Perhaps you would like to do something like this with your local support groups.