"Nobody realizes that some people expend tremendous energy merely to be normal." Albert Camus
Since my diagnosis of Parkinson’s Disease (PD) 19 years ago and Deep Brain Stimulation (DBS) surgery 10 years ago I have attempted to look and act normal, and sometimes I have been Nearly Normal. It takes a lot of hard work and patience. I've always been long on hard work and short on patience.
Several friends without PD have commented, “most people would not be able to tell that you have PD.” I accepted these words as compliments as they were intended. Upon reflection, I wondered if looking and acting like I don’t have PD might be condescending toward the people with PD who are not doing as well. And if my goal is to increase awareness in the public about PD, how does minimizing or disguising my symptoms help me to do this?
With eating and swallowing, I remember to carefully get my food securely on my fork, maneuver it to my mouth, swallow, avoid spilling food on my clothes, the table or the floor (I’ve occasionally dropped food with my shaky hand on all three surfaces during the same meal). I remind myself to slow down the pace of my eating, take small bites, and do a lot of chewing. I need to be careful to take my time when I swallow my food and drink my beverages, so that the they don’t go down the wrong pipe
When taking my medications, I don’t throw the pills into the back of my throat and swallow, but instead sit or stand up straight while slowly take one pill at a time.
While walking, I avoid distractions such as talking on my cell and don’t wear earphones or listen to a CD. I concentrate on my walking.
Up until recently, I prided myself on NEVER falling. I was the PD poster child for perfect balance and gait. But more recently, when I fall, I often catch myself before hitting the ground and avoid a full-fledged fall.
I expend tremendous energy when I attempt to look and act Nearly Normal. I must constantly be vigilant and avoid distractions. I gotta wonder if it's worth it.