As a matter of fact, I didn’t dream at all…
My life was shattered with an incurable disease diagnosis. I had nothing to live for because I was projecting my disease progression in fast-forward to the latter stages. Disability concerns consumed me because I had girls to raise, get through college, and make sure that my financial responsibilities were not shirked.
What seemed forever and a day of sheer darkness, despair, hopelessness, and helplessness in the form a deep depression, I came to realize that there were many more people in the world in worse shape than I, and that I needed to change my way of thinking and start on a new path. That day is indelibly stamped in my mind when I turned a corner and have not looked back since.
Even then I didn’t dream, I only made a promise because, after all, I didn’t have a clue as to what this incurable condition called Parkinson’s Disease had in store for my future. I promised that I would do what I could, while I still could, to make a difference in getting rid of this disease.
Being in the public arena has not always been easy, but it is a necessary part of what I do to share my message in a positive way, never antagonistic, tenacity-driven, and always respectful of whomever I encounter on this journey.
I’ve been blessed beyond compare through the years as I’ve developed my message of awareness and education of Parkinson’s Disease research and health-related quality of life issues.
I’ve often been asked about my involvement in several national and international Parkinson’s Disease organizations. My standard answer is that if I am asked to help and feel that what I have to offer is of value to the organization, program, initiative, event, etc., then I will wholeheartedly offer my support. Thankfully, not all of the activities and events happen at the same time, thus giving me a chance to focus on how to best utilize my time and effort.
If anyone would have told me that my journey would take me to serving on the Board of Directors of the Parkinson’s Action Network (the unified voice of the Parkinson’s community on issues related to public policy and health-related matters), being part of the Executive Council for Parkinson’s Movement (an international organization led by people with Parkinson’s, speaking out on issues that impact us all, and finding ways to improve the clinical trial process, which in turn can impact the health-related quality of life of all us living with P.D), being part of the Integration Panel for the Congressionally Directed Medical Research Program – NETPR for Parkinson’s Research and helping direct millions of dollars in research funds to where we feel they will have the biggest impact, Co-chairing the Program Committee for the 2013 World Parkinson Congress held in Montreal and being part of this life-changing event that has given rise to patient advocacy around the globe, and representing in various capacities, mostly with outreach efforts, the Parkinson’s Disease Foundation as a Research Advocate, the World Parkinson Congress as an Ambassador for the 3rd and 4th Congresses, the Michael J. Fox Foundation for Parkinson’s Research (an organization that is in business to go out of business because of their laser-focused work on finding the elusive cure) as a Fox Trial Finder Ambassador and a Partners in Parkinson’s Ambassador. Then, add to this, being part of the Editorial Board of the Journal of Parkinson’s Disease…I would have said that I couldn’t dream this far.
In my manuscript (which I should stop revising and get published soon) I write about the reason for sharing my journey…
-If it helps one person to realize that a Parkinson’s Disease diagnosis is not the end of the world, then the time and effort have been worth it.
-If it helps one person to know that what they have to offer as an advocate for Parkinson’s Disease awareness and education can make a difference, then the commitment has not been in vain.