By Maura Horton, Special for USDR
There are elements of Parkinson’s Disease that are rarely discussed. When outsiders think of the disease their mind often flashes first to the always-loveable Michael J Fox and his great demeanor and positive outlook. We prescribe to his Always Looking Up mentality but there’s a side of Parkinson’s that those in the community live everyday. It’s one thing to rise above your body betraying you and your loss of ability to do things you once took for granted like small things such as buttoning a shirt and writing to much larger things like walking, talking and keeping your balance. But it’s another thing to be treated like your invisible.
One thing that is rarely examined is how people who are unaware of the disease can treat a person with Parkinson’s, the second largest neurological disorder. When we are out, as a family we notice. We feel the stares, hear the loss of patience and see the rolling of the eyes. We can imagine what is whispered. We listen to the obligatory; “I’m sorry” once we disclose the diagnosis to new acquaintances. We are aware of both friends and strangers relief ~thankful it’s not them.
Our youngest daughter occasionally asks, “Why do they think dads unseen”. In her journal entry recently she wrote
“ People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces”
I am heartbroken that at seven she understands people glance over her dad. Many Parkinson’s patients isolate themselves and stop interacting in public. Social situations can overwhelm them and their ability to communicate is paramount.
My husband has difficulty with his speech. His tone is now soft, which is odd for a career college football coach and his speech can be slurred. Communication is key for almost every facet in life. But for someone with Parkinson’s even basic dining experiences can present a challenge. Whenever we are out at a restaurant, regardless if it’s quick and casual or a more formal setting; when he attempts to order his food we see the waiter struggle to make out his words. Sometimes the waiter slows down to listen but most of the time; they look to me to take over as awkward silence ensues. Then when the meal has ended, the check comes and it’s time to pay 9 times out of 10 they hand me the bill, ignoring and avoiding his existence at the table. It’s a quick 2-minute exchange that seems harmless but is completely deflating in so many ways for all of us.
Parkinson’s manifests in many forms, from shaky and movement dominated to rigidity, frozen and unable to move. Polar opposites and all present variable challenges. My husband is rigid and gets trapped, his word not mine in chairs, cars and situations, unable to move forward. He is slower and more precise in his movements because he’s forever conscious of his steps and balance. Constantly trying to prevent him from falling. What takes time for many is annoyance to others. We witness the eye rolling and hear the deep sighs. Our oldest gets the most frustrated when she sees this. I often notice her looking down to avoid the encounter but we all acknowledge the un-kind behavior in private.
Loosing your ability to maintain the life or existence you once had shouldn’t enable others to treat you as if your existence is irrelevant. Don use to field several calls a week from those who just wanted to stay connected. Mostly from colleagues in the coaching world many of whom he considered his friends. Some he helped further their career. The truth is now there are fewer and fewer calls. I am always thankful to the ones who continue to check in with Don – especially now, knowing that he isn’t able to help them as much but hat they are helping him now by sincerely caring. Don’s knowledge and passion for the game he coached has not changed but some support that he is able to contribute to the game because he has a disease has. Daily being told you are unable to make a contribution to anything will change a person’s footprint forever if you let it.
People’s perceptions affect us daily but what we try to tell our girls is to not, not ever, lower their expectations of how they expect to be treated by others. Minimally this will forever shape how they and those who are touched by the disease, treat people.