The following was written by amember 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 a
n 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 developes. 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 ajustment. 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- Wew are ready to go somewhere and as I get up, I can hardly move.
Mabe 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 lesson 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 togeather and speak for myself. I'am 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.
Too me that says it all !
Regards,
Russ Ahlstrom Russe23681
