“I am a person with Parkinson’s disease…
Parkinson’s disease is not contagious or hereditary. No one knows what causes it, but dopamine cells in the brain begin to die at faster rate. Everyone slowly loses some dopamine cells as they grow older. But if the cells suddenly begin to die at an accelerated rate, Parkinson’s disease develops.
Medicines can help. I will take newer, stronger kinds over the years. Some will make me sick. Stick with me. I will have good days and bad days.
Sometimes I cry and look upset. You may think you’ve done something to hurt my feelings, but you probably haven’t. It’s the Parkinson’s. Keep talking to me and ignore the tears. I’ll be okay in a few minutes.
You probably expect me to shake. Maybe I do; maybe I don’t. Medicine helps with most of the tremors. But if my head, hands, or feet are shaky, ignore it. I may sit on my hands or put them in my pockets to try to manage my tremors. Treat me as you always have. What’s a little shakiness between friends?
You may think you don’t entertain me anymore because I’m not grinning or laughing. If I look like I’m just staring at you, that’s the Parkinson’s. I hear you. I have the same intelligence that I’ve always had. But it isn’t easy to show facial expressions. I may drool and feel embarrassed.
When getting ready to go somewhere, I may be slow to get up and move. Maybe my medicine is wearing off. The stiffness is part of the Parkinson’s. Let me take my time. Trying to hurry me will not help.
I need to exercise every day. Walking two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I’ll get there. Encourage me and remind me if I slump or stoop, I don’t always know I’m doing this. My stretching exercises need to be done every day. Help me with them if you can.
As my deeper tones disappear, you’ll notice my voice is getting higher and wispy. That’s the Parkinson’s. I know you can finish my sentences for me, but I don’t care for that. Let me talk, get my thoughts together, and speak for myself. I’m still there. My mind is okay. Since I’m slower in movement, I’m slower in speech. But I still want to be part of the conversation.
I may complain that I can’t sleep. If I wander around in the middle of the night, that’s the Parkinson’s. It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can’t always control when I’m tired.
Be patient, my friend, I need you. I’m the same person, I’ve just slowed down. It’s not easy to talk about Parkinson’s, but I’ll try if you want me to. I need my friends. I want to be part of life.”
*Written and edited by an anonymous person with Parkinson’s disease.