Am I Losing My Mind?
Each day starts out pretty much the same way. I try to get out of bed gracefully (which means without falling). Usually successful I then make coffee and take meds. After breakfast, I spend most of the morning hours answering emails, checking social media and searching for information about Parkinson’s disease in an attempt to glean what new drug might be the subject of study or perhaps to catch a glimpse of some new innovative treatment that could “shake up” the Parkinson’s community. Bad pun intended. My curiosity is almost always satisfied by the hundreds of clinical trials being conducted all across the globe. The scientific research community does an amazing job through networks of collaboration and partnerships despite, often insufficient funding, political pressure and overregulation. Unfortunately, most clinical trials fail somewhere between phase one and phase two. Often referred to “the valley of death” by industry types. The reason for this can be any number of things or a combination such as I’ve already mentioned above and even from the lack of volunteers or poor performance. What does all this mean?
I’ve learned a lot throughout my 22 years of living with PD, and I’ve learned a lot from other people too. I haven’t met one person yet that wants to have this disease. In educating myself virtually every day, through hundreds of resources including ParkinsonsDisease.net, I have become frustrated with the process. Each year, there are conferences, symposiums and other events that showcase the latest scientific research – the best and brightest minds applying cutting edge technology to solve the ultimate question for PD: When will there be a cure?
Time marches on
When I was diagnosed in 1995, my doctor said, “You’re lucky you’re so young. Science is making great strides toward finding a cure.” In my opinion, amidst all the efforts by the global scientific community, there is this progression of PD; like a grandfather clock, that ticks louder and louder reminding us of our vulnerability. Personally, I’ve sacrificed tremendously because of PD. It has cost me relationships, several jobs, forced me to relocate not to mention the financial costs and it seems to keep on taking. I’ve never feared death but recently, I’ve lost quite a few friends to PD. True pioneers, in my mind of living for the moment – in the here and now. Well, I’m here and I need answers in an urgent kind of way.
The amazing brain
It’s been 22 years of living and waiting for somebody, somewhere to shout, “Eureka,” I’ve found a cure! They (the great scientific minds) say, that as we age that our brains begin to shrink. I believe this is true because the older I get, the less I can remember, organize, strategize, process and even to do simple math. Sure a lot of it can be blamed on senility but give me a little credit for recognizing the cognitive dysfunctions of having PD.
So to summarize, don’t forget to educate yourself and ask questions of the experts, take an opportunity to hug your local PD researchers who are working on a cure and remember, living with PD is a series of battles, you have to keep fighting until the war is won or until your brain shrinks to the size of a walnut. On to Victory!