Parkinson’s disease is complex, difficult to explain, and often unpredictable. My deep brain stimulation surgery of four years ago has bought me time, but as my Parkinson’s symptoms grow in severity, again, it is not any easier dealing with the pervasive misunderstandings of the disease.
Except for permanent bags under my eyes, I look surprisingly good well into my Parkinson’s adventure, but after morning exercise, the day usually turns into an exhausted struggle fighting surprise sleep attacks that make saying a word an arduous chore. Interpreted as laziness or rudeness, extreme fatigue makes interactions with people awkward and unpredictable.
When you look relatively “normal,” people inevitably assume that you feel “normal.” Frankly, I wouldn’t know what “normal” feels like if it jumped up and bit me in the ass. I rarely sleep more than an hour or two in a row, averaging 3-5 hours of sleep nightly. Medication makes me more tired, as does the disease itself, but I’ve learned through experience that If I do not exercise strenuously, physical deterioration and deep depression will follow.
It is incredibly draining, and day after day, year after year, it never stops. The fundamental misunderstanding is that my challenge is not one of time; I’ve got plenty of that. I face an energy problem, a frustrating, bystander’s stupor of intense boredom.
Parkinson’s has brought many positive things into my life, not the least of which is a renewed appreciation for the joy of laughter, especially when the alternative is a painstaking explanation that is unlikely to be read or understood. Now, that, is funny…