The other day I ran across a quote that read something to the effect, “I never realized that one day I would wake up sick and never get better.” I suppose, with those of us who live with a chronic illness day to day, we can relate and understand that statement all too well. I certainly can.
While married and raising three teenagers, I was officially diagnosed with Parkinson’s disease at the age of 44 (after having lived with a faulty lupus diagnosis for almost 10 years). I say “officially” because it took “only” 15 years, and more than a half-dozen doctors to properly diagnose what I often refer to as “Little Monster.”
However, the doctors are not to blame. Parkinson’s disease can be tricky to diagnose. There are many days I have wondered what is wrong with me, even now since receiving my diagnosis years ago. In terms of how I am feeling on a particular day (Am I suffering from the flu? Did I pull a muscle? Is the way I’m feeling due to getting older?), I’ll wonder if it’s connected to my PD. I’ve lived with this Little Monster for almost 25 years, and still don’t have it down in terms of who’s to blame for my ailments. Is it the flu? A normal backache? Aging? Little Monster himself? More often than not, it is he.
Watching my thumb twitch early one morning in bed, who would have known that a few years later I’d be reading Lucky Man by Michael J. Fox, only to find out that my way also was his way of starting this journey with Parkinson’s disease? Certainly not me.
Even though I had been properly diagnosed for years, I’d still exit the medical building, walk to my car in the cold winter rain, get inside and cry. Not just because I had PD, but because now I knew I had PD. Amid the grief I felt, there also was a relief in knowing what it was and now something could be done, even if only for a time.
Soon, with constant encouragement from my movement disorder specialist, Anthony Santiago, MD, I began to see opportunities amid the problem. Opportunities for reaching out and encouraging others, coming alongside of others who were not as far along as I, or those who were just entering this new journey known as Parkinson’s disease and reminding them they are not journeying alone.
Having PD, we all have separate and unique journeys we have been set upon. Yet, though the path can and will differ, it is much the same.
I hope to share with you in this column knowledge I have gained, wisdom I have gleaned, understanding that I have been taught through experience, and some humor I have found amid my personal journey with Parkinson’s. disease. It is a hard journey. A long journey. But, it is not without its own rewards, and being able to share my experiences and what I have learned is just one of many.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Todayor its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s Disease.