“Don’t ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive.” Howard Thurman
I'm resurrecting an old blog post for Parkinson's awareness month. The author is unknown. It's the same message then as now, but at least now I'm talking about it.
Letter to family and friends about living with Parkinson's Disease:
I have Parkinson's Disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older.
If the cells suddenly begin to die at a faster rate, Parkinson's Disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.
Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's. Keep talking to me. Ignore the tears. I'll be OK in a few minutes.
Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends?
My Face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's, I hear you. I have the same intelligence; it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.
Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's. Let me take my time. Keep talking.
Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending and exercises must be done everyday. Help me with them if you can.
My Voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.
Sleeplessness: I may complain that I can't sleep. If I wander around in the middle of the night, that's 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 or feel like sleeping. Be patient, my friends. 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 really want to know. I need my friends. I want to continue to be part of life.
Please remain my friend.