How bout making up a little calling card that could be handed out to friends and family and others. The card could have any number of statements or information, and could state something like:
I have Parkinsons
Overall I'm feeling well - or not so well
My symptoms are.....
My challenges consist of....
Thankyou for asking and caring!
----- Original Message -----
From: [log in to unmask]
To: [log in to unmask]
Sent: Saturday, April 20, 2002 3:04 PM
Subject: How do you tactfully handle this situation?
Hi
Spent the first part of this weekend with the "local YOPD" support
group......and I posed a question with a small section of that group.....we
did not come up with a solution, but did have some interesting discussion on
this topic. Does this situation happen with any others out there?
Background: I was dx 9 years ago.....I do not have dyskinesia......my tremor
is generally masked by meds.....I do have facial masking.......it is often
very very tiring for me to speak.......gait is bothersome but on short
distances (curb to door) I may appear to do ok.....I never walk a block
without a cane.....I do a great 2 hour mile......So in general, you get the
picture that I do not "present" with the noticeable challenges of
movement.......when I am off I have stiffness, not extra movement. (might
add that my "good on time" is about 4-5 hours total during a 24 hour
period.....so my effort to appear at a meeting/gathering, work in my yard
etc.....is a carefully planned an orchestrated situation).
Question is: How do you respond to a medical professional who says......you
are doing great.....or you don't appear to have any challenges.
Or: How do you respond to the acquaintance who cornered you at a meeting, in
your yard, or wherever......who says......"but you don't have any problems,
you look great".
Or: (when masking is grasping hold for the day!!).......Are you tired? Why
don't you smile? Are we boring you? Get with us today! or something
similar.
(other than those situations where the comment is made in passing and they
don't expect an answer).
I have this problem..with medical professionals/allied health people....I
generally feel that my credibility has been challenged...would you believe
anything I say...you have now put me on the defensive.
I have several "friends" who seem to pursue this line of questioning about my
"challenges" in the past year......who would not let up on this line of
questioning/
comments.
I find that I am now consciously avoiding these people and
situations.....because I do feel challenged by these comments. I do dread
spending the energy and make the sacrifices of good time to go out......
I don't want/expect sympathy............but I do resent being put on the
spot.
Are you disturbed when this happens to you? How do you tactfully (or
untactfully!!) respond?
Rita W 57/12
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
