It is 9:15 AM, and I took my first dose of meds 15 minutes ago. It usually takes 75 minutes for the first dose to go into effect. The phone rings, and I shuffle to it with cramped toes. I look like a snail trying to hurry because I know that the voice mail will pick up if I’m not fast enough. But there is no rushing with Parkinson’s disease (PD).
I pick up the receiver of the phone on the fourth ring. “Hello,” I say with my hoarse, whispery, PD voice. A young female with an Asian accent softly says, “Hi Kate. This is Sunshine.” I remember this voice from the past. When she moved to the states, she changed her first name from “MiYeong” to "Sunshine,” so that it would be easy for Americans to pronounce, it would be easier for her to fit in.
Sunshine volunteered at the hospital when I was an employee in the volunteer office. With the birth of her first son more than four years ago, Sunshine left volunteering. I have nostalgic memories of the baby shower that we hosted for her.
I’m curious why Sunshine is calling after four years. She says that she stopped in at the volunteer office and was upset to find no one from the past, and learned that I had “retired.” I correct her misinformation stating that I hadn’t retired but am now on permanent long term disability because of Parkinson’s. “Why didn’t I know that you had Parkinson’s?” she asks with a wounded voice. I confess that I wasn’t comfortable talking to most people about it until it became obvious that something was wrong, that finally I had to reveal what I no longer could conceal.
“I don’t know much about Parkinson’s,” she states, and then proceeds to ask questions that some of my friends and family have never asked.
“Are you able to drive?” is her first question. “Sometimes” is my response. I further explain that if my meds are working effectively, I am able to drive. However, when my meds stop working after two hours and forty five minutes or at other times for unknown reasons, I don’t feel safe to drive. At these times, I feel like I am in a fog, have difficulty focusing, and my reaction time is slow. When this occurs, I stop driving, park the car, take the bus home or call someone for a ride. I always keep extra bus passes in my purse if I need them.
“Does Parkinson’s affect your walking?” she inquires. “Sometimes” is the same response, again, another qualifier as an answer. This is also related to the effectiveness of my medication. I further elaborate and say that initially my left side was more impaired with Parkinson’s. But now Parkinson’s has spread to my right side as well. I sometimes have gait problems, drag my left foot, have balance problems and occasionally fall.
She asks about the impact of PD on my cognitive functioning, and I am able to divert the question to a more comfortable area.
“What about eating?” she wonders. I tell her that I had more problems in the past keeping my food on the fork and not dropping it on the floor, and then it was sometimes tricky getting the food into my mouth. Because the surgery resulted in less tremor and shakiness, eating is not much of a problem now. However, the ongoing challenge is not eating with the medication but a half hour to one hour after so that the food does not interfere with the absorption of the meds.
When we say goodbye, we exchange phone numbers and emails. I am proud of Sunshine that she is assertive in asking questions, and I am also proud of myself for being honest in responding. I hope she knows that she brought sunshine to my life today.
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