Unfairly Compared to Others with Parkinson’s
I’ve heard it more than once, “Why don’t you move more like your friends?” or “Why can’t you be more like (fill in the blank)?” The person speaking is a spouse, parent, or friend who doesn’t understand the uniqueness of each and every Parkinson’s patient. It pains me that a family member or friend would compare a loved one to another person with Parkinson’s. A comment like this is NOT empathetic, understanding, or compassionate!
My recent dyskinesia episode
Recently, I ran into a friend and blog follower. I had a surge of dyskinesia where I briefly moved and writhed without control. As I have explained in prior posts, dyskinesia is an L-Dopa drug side effect from too much medicine. The uninitiated will call it, “a dance”, which it is not! A dance is usually meant to commemorate an event, to express oneself, or just to show emotion. Dyskinesia is none of the wonders of dance nor is it humorous!
I don’t condemn those who unknowingly make light of the irregular gyrations that come with dyskinesia, but I do question the human reaction to giggle, smile, or laugh at the individual and refer to the movement as “a dance”. Even if you know someone well, I think that this is an appropriate opportunity to educate someone who isn’t living in our skin with an informative response.
People with Parkinson’s can be misunderstood
I think it’s important to explain to those who don’t understand Parkinson’s that it is unfair to compare any PD patient to another or to make light of a medical side effect. It is an opportunity to share, enlighten, dispel, and provide an important and maybe an even life-changing moment. Unfortunately, those with Parkinson’s are capable of being misunderstood for a battery of reasons ranging from speech to body language to lack of facial dexterity. In the quest to be functional, patients may be “too on or too off”— a variance of extremes.
Better education is necessary
Only through better education and explanation are we going to help put an end to a poorly understood illness, like Parkinson’s disease. The best advocacy is to inform, dispel, and not to refrain from what should be known about your condition.