Last April I wrote an article called "Angel's Wings" which some of you may have seen. I tried to explain why I didn't feel I could take credit for some of the great things that were happening in my life. As the current year comes to an end, I have been thinking about all that has transpired. Some times, I feel like I am dreaming and hope I won't wake up.
It started in February when I visited the Muhammad Ali Parkinson Center to make presentations to their support groups regarding my PD journey, advocacy work, and children's book. This was enough by itself, but then the local Fox TV station showed up at one of the presentations to interview me! I also was invited to present to the Medtronic folks in Phoenix that design and produce deep brain stimulation (DBS) equipment to help them get a feel for how their work is making a difference in patient's lives.
In April, I was given the honor of making a patient presentation at the April "Triumph" fundraiser breakfast. This gave me the opportunity to tell the Denver PD community and it's supporters about my advocacy work and how I am trying to make a difference. I was blown away by the graciousness and appreciation shown by these folks!
In early June, I participated in the PAR Vitality Walk at Washington Park with Linda and friends from my Highlands Ranch support group. This year I was happy to be joined by my entire family including my boys (Kevin & Brian), their wives (Christa & Sybil), and six grandchildren (Carson, Doug, Dani, Carina, Kaya, & Bryson)! Needless to say, I was thrilled to introduce them to my friends, doctors, and more. I appreciated so much their show of support for me and the PD community!
Linda and I had applied for the second time to participate in the Parkinson Disease Foundation (PDF) Clinical Research Learning Institute. We had the honor of being chosen to participate in their training session in July in California. It was a wonderful opportunity to meet and get to know the PDF team, fellow advocacy trainees, advocacy alumni, and participating doctors there to present. Among them, my own doctor, Benzi Kluger from University of Colorado Anschutz Hospital! Linda and I are excited by the important multi-faceted work PDF is doing to educate and encourage participation in research by PWP's and care partners. We were proud to join the ranks of official "Research Advocates" working with doctors, researchers, support groups and media across the U.S.
We worked with PDF in the subsequent months to "get up to speed" and apply our training. However, I must admit that I started to feel as though the variety of advocacy opportunities that had presented themselves over the last year were a "thing of the past". I was wrong.
Before Thanksgiving, I got a call from a marketing contact I had met with Medtronic. Much to my surprise, she asked if I would be willing to be the subject of a photo shoot to take place in NYC in December. Seems that Medtronic had decided to develop a marketing campaign to communicate with doctors, hospitals and prospective patients. I was amazed, but honored, that they wanted me to be involved in this way. Once again, I was given the opportunity to "make a difference" (albeit in a different way) by helping encourage prospective patients to consider and learn more about deep brain stimulation (DBS) to enable them to make an informed decision regarding whether it is something that would be right for them.
Ending the year on a surreal note, I had an inspiration while working out for a "PD theme song" of sorts by "adapting" an existing song by a popular artist that might be a source of acknowledgement, support, and encouragement for PWP's and care partners. Additionally, it could be a vehicle for helping the general public understand the challenges of PD a little better. All of this is amazing enough, but, with no previous experience, I actually wrote the new lyrics myself in a total of about 45 minutes! I am in the process of exploring how this might take shape, but regardless of the outcome, I know I have been given a special gift.
I have said on a number of occasions that, in the face of a challenging illness, I have been given the opportunity to do what I was meant to do and be who I was meant to be for the first time. For this to happen at this point is both ironic and miraculous. There is no way that I will be convinced that all this is coincidental or "good luck". It is hard to find the right words that won't sound egocentric or vain because I would hate to be perceived that way. For some reason, God has chosen to give me these gifts.
Last, but far from least, we have our son, Brian, and his family home from China for the holidays! We have had a wonderful time, including a full family trip to the mountains for dogsledding!