| I found the following letter
in the book "It's all in your head: Living and coping
with Parkinsons Disease" by Russell Ahlstrom, a Parkinsons
patient, and feel that it sums up how I feel perfectly. I
struggle with all of the below issues and it is my hope you
will read this and then perhaps you will have a better understanding
of what I am living with. I'm not looking for sympathy just
understanding. -Tom Berdine
A LETTER FOR MY FRIENDS (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.
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, 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 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.
I want to continue to be part of life. Please remain my
friend.
(The preceding was written by the wife of a man with Parkinson's
This is her version of what it might be like to have Parkinson's
Mr. Ahlstrom gave me permission to use this letter.)
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