Tom,

Did you see the following, somewhat similar theme, from last month?  It
launched a thread which ran for several days and bought up a few
suggestions which nust be available through archives.
Nancy Porter

>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 Weeks  57/1

Tom mccreary wrote,
>Actually to whom it may apply,
>Having recetly been given the task of recording diifferent stations in my
>life i would llke to solicit some feedback. I am wrsetling  with caoturing
>my thoughts regarding my future. To yhose that are still at a point of
>inependence wit most if ot all actiiviyies, how would you expppress your
>outlook on your fiture whnen you kow what is in the decck youhold but
>others, who see you only when medicated, think yo can work a fll day
>andkeep up wth the old gang.  Is it just me who caant see a silver lining
>here? This  hypotetical is primariy focusing on hubamnds and  fathers who
>get their sense of worth from their contributioons made to their families
>and their communities and their legacy they will leave behind.  This is
>not without its appliation to women in their myriad of roles.
>At 49 dx at 40 and a aving been a sucessful custom  home designer, I am
>strugggling with this because it is forcing me to take a hard look at and
>even to forecast and compose my thoughts regarding where i will be at
>periodic intervals. This is forcing me to have to consider some things i
>had been denying and not talikng about. My symtoms are mild yet and
>acquaintances cant figure out why i am not working ful time. If you can
>share with me what sort of experience wth either your own optimism or the
>sort of pesrpective those around you have about you not cloccking in 8 to
>5 i would appreciate it. And if you prefer, you can send it to me directly
>and not get into confessions on the list.
>
>tom at [log in to unmask]
>

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