The following Letter was posted on a Parkinson's support group on Facebook. Following each paragraph, in italics, are my comments.
A LETTER FOR MY FRIENDS AND FAMILY
(author unknown)
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 the 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.
I'm one of the lucky ones, I too have my good days and bad days, but I've yet to experience a bad day that was so bad, that I felt that I was in any way incapacitated. The Medicines have helped. It's been almost two years since I've increase the dosage or changed the medications. Frankly, since I take them every day. I don't know what I'd be like without them.
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.
I've never been one to show my emotions. So there has never been a moment when I've broken down and cried.
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 shakes appear mostly in my legs. When I sit they will sometimes shake uncontrolably, until I can find the correct position to sit in. At a closing, because I am sitting next to my client, instead of across the table, my legs often start up. I'll stand for a moment, using the excuse that my back is stiff. This usually settles them down.
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.
I have no problem laughing, it's by far my favorite thing to do. However, my face has become expressionless. Even when happy, I have to force a smile. I haven't drooled while swallowing, but I do sometimes drool in my sleep.
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.
This is a fact of life. Everything that I do takes longer. Now I am somebody who has rarely been late in my life. Now, even for a short trip, I give myself a considerable amount of extra time to get to my destination.
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, exercises must be done everyday. Help me with them if you can.
Whoever wrote this letter was right. When I walk with someone else, I often can walk faster and with less difficulty. My biggest problem is remembering to swing my arms. This is not just a silly trait that humans have, it helps balance. When I move my arms I don't slump or stoop. Ergo, I move much faster.
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.
My voice is softer and I tend to mumble. I can still bellow when I want to.
Sleeplessness: I may complain that I can't sleep. If I wander around in them 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 and family. I want to continue to be part of life. Please remain by my side.
My only problem with sleeping is waiting for my head to hit the pillow. I fall asleep at my desk. I'll lie down on the floor of my office to take a nap. I've even fell asleep in the dentist chair, with a hand in my mouth.
I haven't found that anybody has avoided me. To the contrary, my friends and family have reached out to me, and made a noticable effort to include me in activities.
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