I read a quote a while back that dealt with doing what needs to be started, worked on, or accomplished now and not wait until summer. Many times we put off doing something to later and place it in the “summer plans” file that seems to be a catch-all for anything worth doing, but that needs time and attention. Unfortunately, the summer plans for creating change do not come easy because all other issues that involve this thing called “life” get in the way. The good intentions are admirable, but waiting until summer to get things done may well go hand-in-hand with the ever popular “I’ll get to it later” and “Someone else will do it”.
Unfortunately, for many in the Parkinson’s community, we don’t have time to wait until summer…
The work that so many in the advocacy arena do, cannot wait until summer, much less wait for someone else to do it. Speaking in favor of change in the research process is an ongoing venture because of the background work needed to be done. The patient voice, the advocate voice, the caregiver voice and the voice of all whom walk with us on this Parkinson’s journey needs to start harmonizing now and not wait until summer.
Public policies that focus on the needs of the many, cannot wait until summer, and this is why the Parkinson’s Action Network (PAN) is so valuable to all of us living with Parkinson’s. The important work done by the staff on a daily basis impacts us all. Research engagement for the patient and advocates in the clinical trial arena that must be made a requirement in order for better treatments and the eventual cure to be found, cannot wait until summer, and this is why Parkinson’s Movement, an initiative of the Cure Parkinson’s Trust in England, a patient-developed, patient-led international advocacy organization is important. Outreach to national and international P.D. organizations has been made asking them to be part of the team for change. We cannot afford to wait until summer.
As I write this post, I acknowledge year number 8 (diagnosed 2-21-2007) of a journey of a lifetime, after having been through the experience of a lifetime (actually about 5 years) in dealing with symptoms that didn’t make sense for what I’ve described “a seemingly healthy individual” not too many years prior. Time has not stood still for me, and it definitely has not stood still for hundreds of my friends in the U.S. and many areas of the world who have committed to make a difference in getting rid of this disease.
So, whether it is an issue having to do with clinical trials, research, quality of life, medical care, public policy, work-related discrimination issues, among many others that those in our Parkinson’s family deal with on a daily basis, please do what you can, and don’t wait until summer….