A support group in Chicago would like to publish the following 1994
msg in their newsletter, but have been unable to contact Mr.
Ahlstrom. If anyone knows anything about this msg, please contact me.
Thanks!
Date: Fri, 16 Dec 1994 12:05:42 -0500
From: "Russell J. Ahlstrom" <[log in to unmask]>
Subject: "A LETTER FOR MY FRIENDS"
The following was written by a member of our support group
and is the best example of what it is like to live with
Parkinson's that I have ever found. I want to share it with
you (list members). I would appreciate any reaction to it.
A Letter For My Friends
I have Parkinson's Disease. It is not catching 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 adjustment. Stick with me. I have my 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 O.K. in a few minutes.
TREMORS - You are expecting me to shake. Maybe I do, maybe I
don't. Medicine today takes care of some of the tremors. If
my hands, feet or head are shaky, ignore it. I'll sit on my
hand or put it in my pocket. Treat me as you always have.
What is 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 as easy to
show facial expressions. If swallowing is a problem, I may
drool. This bothers me, so we'll mop up.
STIFFNESS - We are ready to go somewhere and as I get up, I
can hardly move. Maybe my medicine is wearing off. This
stiffness or rigidity is part of the Parkinson's. Let me take
my time. Keep talking. I'll get there eventually. Trying to
hurry me won't help. I can't hurry. I must take my time.
If I seem jerky when I start out, that's normal. It will
lessen as I get moving.
EXERCISE - I need to walk each day. Two or 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'am doing this. My stretching, bending,
pushing exercises must be done every day. Help 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.
Listen to me. I know you can talk louder, faster, and finish
my sentences for me. I hate that! Let me talk, get my
thoughts together and speak for myself. I'm still there. My
mind is O.K. 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 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 or feel
like sleeping.
Patience 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 really want to know. I need my friends.
I want to continue to be part of life. Please remain my
friend.
To me that says it all !
Regards,
Russ Ahlstrom Russe23681
