May 2023

Not The Man I Used To Be

Thanks to Parkinson’s disease, I’m not the man I used to be. Let me count the ways.

I’m slower than others in my age group. I tire more easily than others in my age group. I have trouble maintaining a train of thought when speaking. I have difficulty walking and am frequently reduced to shuffling. I don’t balance well. I am at constant risk of falling, sometimes several times per day. I have broken at least one arm, a wrist, and a knee. At night I act out my dreams. I don’t play music as well as I used to. I am constantly troubled by a runny nose and occasionally by excessive drooling. (Which brings up the question: what amount of drooling is not excessive?)

I would have a tremor in my left leg, but it is controlled by an implant in my brain from Deep Brain Stimulation surgery. I charge up my brain stimulator every morning before having breakfast for fear that if I don’t I will lose the benefit of the implant. I don’t multi-task well. I don’t solo-task that great either. I am no longer employed. I have difficulty sleeping at night. I have trouble staying awake during the day. My sense of smell is screwed up. At night I contend with double vision. In the mornings I have dry eye.

I don’t speak with a loud, clear, authoritative voice. I avoid eating meat until the evening meal to head off the risk of undesirable interaction between my meds and the protein. I avoid dairy because it is associated with negative outcomes for people with Parkinson’s. I experience urinary urgency and make many frantic dashes (insofar as I can dash, it’s actually more of a speed shuffle) through the gloom of night for the porcelain throne to appease my hyperactive bladder. I have taken up eating prunes to avoid bouts of constipation. I don’t show emotion on my face. I have lost a great deal of my independence. I rarely drive a car. I don’t get out as much as I used to. I have dyskinetic movements from time to time. I commonly have episodes where I freeze and can barely move my feet, but I’ve ridden thousands of miles on my bicycle.

I have depression. I startle more easily than I once did. I have difficulty concentrating. I have oily skin. I have swallowing difficulties, which lead me to choke on food occasionally. I take pills, many, many pills. I frequent doctor’s offices. I’ve attended support groups and seminars and conferences. I’ve spoken at conferences. I led a support group. I wrote, illustrated, and saw published a “Graphic Novel” about PD. I blog for a Parkinson’s Web site. I have a new circle of Parkinson’s friends and their relations. I’ve seen people live and die with Parkinson’s.  People I would never have known without our shared affliction. 

I miss them.

I’m not the man I used to be. I’m not the man I meant to be. But I am no longer afraid of Parkinson’s.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger