Dear Randall,
Most of us have struggled with and sometimes still struggle with when to let
people know that we deal with PD. I face a dilemna every time I go out on a
date. Will she notice the mask when I'm off? Will she think I am too
serious or uptight? Will she think that I am boring because of my low
monotone speech? Will the dyskinesias be so severe that I throw my water
into her face? Will she think me rude or paranoid if I tell her up front
that I am troubled by a movement disorder that has no cure? Or will she
feel sympathetic, but so much so that she doesn't see the real me? What if
I tell her later? Will she be offended I was not honest from the beginning?
Over time I have found it is best to be honest about it from the beginning.
If you present it as if there is not a problem, you will find that trying to
hide it does in fact make the symptoms more noticeable. It is part of
accepting the facts of being a PWP, that people will not all react the same
to our apparent movement problems. Some will ignore, some will stare, and
some will show concern, and some have the ability to react as if there is
not a problem in that they are able to look beyond the disability to have a
normal conversation with you. None of these reactions is necessarilly any
more appropriate than the others. It is just that it is a diverse world we
live in. People are different in how they see a disabled person. We are
the ones that adjust if there is a need to adjust. We have more experience
with it.
I would like to welcome you to the list, and hope you find it as useful as I
do. It definitely helps to know others who can empathize with you.
Regards,
Greg Leeman 37/7
l-----Original Message-----From: Randall Ford <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Sunday, March 22, 1998 9:39 PM
Subject: Musician/Teacher/Counselor with tremor
Hello !!! This is my first submission to this list. Let me tell you about
myself. I teach elementary general music, grades 1 - 6; I also teach
private guitar and piano lessons (presently 15 students); I also teach
evening college classes in Psychology and Music Appreciation (one or two
classes a week depending on whether I'm teaching both courses in the same
semester); I have also taught graduate-level counselor education courses at
Emporia State University in Kansas ("Individual and Group Appraisal" and
"Management of Counseling Programs") as an interim instructor; I was once a
school counselor (and have always hoped to return to that someday); I have
done some private counseling with children and families; I am going to lead
a parenting class for a tri-county mental health center in the fall; in
other words, I've maintained a very busy life. I also used to direct a
church bell choir and play guitar in a country/rock band on weekends. My
wife and I have six children, four of which will be in college this next
fall - we will just have one left at home and he'll be a junior in HS. I
love Irish and Celtic music and I love to play my guitar and sing. My wife
is a wonderful hammered-dulcimer player and we occasionally perform for
churches, social groups, private gatherings, etc., and we enjoy going to
music workshops. We even spent two weeks in Ireland in 1996, just driving
around, visiting the pubs and enjoying the music.
About six weeks ago I was diagnosed with PD. It was no surprise to me, I
have been having tremors in my right foot for about three years and the
tremor in my hand started last summer. My doctor and I at first attributed
it to being a side effect of my asthma medication (serevent), but it was
only on one side of my body. He finally refered me to the KU Med center in
Kansas City and I was diagnosed. I am now involved in a 5-year study on
Tasmar and am taking Sinemet.
My biggest concern is my future as a musician. I am noticing considerable
impairment in playing the piano - but the Sinemet does help some. My
students at school have noticed my tremor for about the last three months -
I've explained it away to them as the asthma medication scenario, and they
seem satisfied.
I would really like to hear from other educators and musicians. What did
you do to adjust? Teaching music is very stressful at times, and that's when
the tremor seems to amplify.
Thanks-
Randall Ford ([log in to unmask])
