It seems that the latest break-throughs in medical research can be found on the evening news. As with most other sensational news, getting information out to the masses, comes easily by way of a three minute story that will change the lives of millions of Americans (and others around the world). I found this out first-hand when a colleague of mine found out I had been diagnosed with Parkinson’s Disease and confidently announced, “I heard that they found a cure for Parkinson’s Disease!” Needless to say, I didn’t pay any attention at the time because I had not heard the news through the proper channels. Wouldn’t my neurologist or movement disorder specialist have made mention of this world-changing event? Why didn’t I get a call from others living with PD to announce the end of our life with Parkinson’s, as we knew it? How dare something so important and life-changing not be brought to my attention?
Most of us have heard, or in some ways participated in the common discourse about “working at finding a cure”. What will a cure look like? How will we know it is the real thing? Is there such thing as a cure? The discussion can be never-ending, but let me not be the one to tell others that the cure for Parkinson’s Disease is not within reach. Why? Because of such a thing called hope. Hope springs eternal when we live with an incurable disease that keeps on taking from us as it progresses. Hope allows us to keep that thought in the back of our minds that tells us to keep going.
The longer that I’m involved in the advoacacy arena, the more I realize that it is not by job to tell anyone that the road they’re taking is not the right one to go on when working at finding a cure. If raising funds that will be forwarded to a favorite regional or national organization gives someone hope, then I’m all for helping get the word out. If speaking to others about the trials and tribulations of living with PD is something that you feel will give someone hope, then I’m all for sharing your story. If participating in clinical trials that may one day help countless others lead a good quality of life, then I’m all for letting others know how they can also get invovled. The bottom line is that everyone can do their part in giving others hope for a better future, despite living with an incurable disease.
How will you or I find out when a cure for Parkinson’s Disease is here? I think the answer to this question will come in many and varied ways. Does a cure mean that the disease progression has stopped? Does it mean that the course of the disease has been reversed? Does it mean that we will all be at the same degreee of being healed of all symptoms? I’m not sure that I know how we will find out when a cure is found, and I definitely don’t know the answer to what a cure means, but….
In the meantime, let us continue working at finding a cure, whatever that may be, but also providing support and encouragement for each other on this journey that all of us would gladly do without.