An inward reflection of what I perceive is happening to my body, mind, and spirit according to Parkinson’s disease reveals much about myself as I battle a war that is raging inside of me but still I question when can I stop fighting, when can I declare victory over this fight.
“My body has seen physical changes over time.”
Doctors say that PD is a progressive neurological disease. That is a true enough statement and based in scientific fact, but what isn’t so evident are the effects on the physical body. Living with Parkinson’s disease for almost 22 years, I’ve seen changes to my body that other people diagnosed with PD have not experienced and yet, there are other symptoms where there is common ground.
A recent trip to the neurologist’s office revealed a recommendation for speech therapy and occupational therapy. Speech therapy for the softening of my voice and difficulty swallowing without choking. Occupational therapy for developing everyday strategies in being able to button a shirt, tie my shoes, brush my teeth, and others. Often we take these things for granted but they are essential for daily living. Other things I observe is that my eyes go from blurry to good vision throughout the day. I am told by the gurus at my neurologist’s office that some people living with PD experience this phenomenon. Scientifically, this occurs because the muscles in the eyes are dopamine dependent. My gait and balance are also affected. I notice that my left foot drags when I walk and my balance is progressively worse. Thank God I’ve never fallen but let’s just say, I won’t be climbing too many trees these days.
“Parkinson’s disease messes with my mind.”
Back in the 1970’s (nostalgia alert!), the United Negro College Fund (UNCF) ran a commercial on television that said, please donate to the UNCF because “a mind is a terrible thing to waste.” Talk about the power of advertising! I can still remember that today which is amazing because my memory has been affected by PD as well. An example of this; I used to pride myself for recalling people’s names and now, I can’t remember names from one minute to the next; so forgive me if we meet and I call you George or Dave unless that is your name. Other mind numbing effects of PD include lacking the capacity to make decisions, organize, concentrate, depression, apathy. Some of these can be attributed to old age (not politically correct) and perhaps other conditions but are common with PD. I know I am painting a dark picture of living with PD and that there are other autonomic functions (those that we don’t have to think about) that are affected that I will address in another article. There are programs in place that assist in improving these issues and I encourage you to look into occupational therapies in your neck of the woods.
“The spirit compels me.”
Of all the de-motivating factors associated with Parkinson’s, I still have my spirit. Let me assure you that didn’t happen overnight. Depression, apathy, worry, self-image, anxiety and more are like heavy weights that can paralyze us. I’ve experienced all of these and it is scary to the point that you just want to draw the drapes and crawl into bed. Sort of a self-imposed hibernation. This is where having an accountability partner helps. This is someone, perhaps a spouse, friend, neighbor or other can encourage and help motivate you to get moving and keep going. Maybe some days that might mean getting out of bed and just getting bathed and dressed. These events may seem trivial but they are real “ta da” moments. Again, I must credit the medical society for recognizing these things associated with Parkinson’s disease and for providing a solution. Neuro-psychiatrists specialize in helping patients deal with these problems through effective therapies. Parkinson’s disease is a progressive disease that affects more than the physical and the brain. PD squashes our spirit, our purpose (whatever your motivation), and attempts to limit those living with this disease. My advice to anyone living with a diagnosis of PD is to investigate all the resources, both medically and socially and use them to your advantage. Incorporate trusted friends and family as accountability partners and seek professional help if necessary. Finally, NEVER GIVE UP! You may share a body/brain with PD but you don’t have to succumb to its will. Keep moving, keep fighting until the battle is over.