Dear Dennis -

I've long been a fan of your writing on the list, but have to respectfully
say I think I disagree with you, to a certain extent, this time.   Let me say
first that, like Janet, I thought, "he must mean me!"   Thank goodness for
Janet's letter, which let me know I wasn't alone in thinking that, and
prompted me to wonder if we, the listmembers, are like a patient recovering
from a serious illness - i.e., the recent infighting - and are all just a
little less resilient and able to tolerate differences of opinion, or are
likely to "read" a difference where really not much of one exists.

I thought your letter was more strongly worded than I would have expected
from you, since I didn't read anything in the responses that touted ignorance
or denial, but represented perhaps differing interpretations of how to
describe end-stage Parkinsons.  The main thing I saw, though, was an attempt
to comfort someone who was distressed over what she'd read and over her
future.  I know you don't intend that this list stop dispensing comfort and
courage and hope (among all the other things we must now avoid).

I thought the PWP the NY Times described sounded as if they quadriplegics,
and therefore thought The Times overstated the case.  I watched an uncle go
through PD before the advent of Sinemet, and it isn't something I'd wish on
my worst enemy.  But I still wouldn't have described it as the NY Times did.
That's why I say I think there was an honest difference of opinion here.

Having said that, I also have to say that the PWP must make his/her own
decision about how much of the future he/she is ready to look at close up.
I know you agreed with that point of view, but rather than say those people
who are not ready to face the future have to choose whether to stay on the
list or not, I say that when someone writes in obvious distress and concern,
I'm going to continue trying to offer comfort, and am not about to say to
*anyone* that they have to buck up and deal with it, <grin> which is pretty
much how I read your letter.

Just wanted you to know that either we're all having an attack of excessive
sensitivity and touchiness, or else your letter came across more strongly
than you intended - at least to those of us who *are* excessively touchy
these days.

Warmly, and still your friend -

Margie

<< t is interesting to notice that almost imperceptibly certain attitudes are
 becoming politically correct in our little community.  Which is a pity
 because political correctness is a tool for social comfort not for truth.
 Take, for example the subject of end stage Parkinson's.  Recent comments by
 Joan Samuelson, as reported in the NY Times, brought this frightening
 subject into discussion.  And how did we respond - we denied the problem
 existed.  We said as to those who expressed their fear at the prospect of
 Stage V PD that it would never happen. Have hope we said - look to the
 future, look to the cure. And it is right that we said so - because we must
 have hope and we must look to the future. We must also raise the money that
 will
 fund the research that will find the cure.  But we should not, in the
 process, deny that Stage IV and V PD exists. It is not some bogey man
 existing only in  imagination - it is real and for a great many of us it is
 not in the future - it is already the present. What's
 more it has not been put on hold because "the cure" is coming.  Even if the
 cure is only 5 - 10 years away a great many of us now in the earlier stages
 will experience these later stages.  If today we silence those people who
 are prepared to share with us the fullness of their experience, by accusing
 them of being pessimists and gloom and doom merchants merely for stating the
 way things are for them, this community will be doing itself a disservice,
 and one the current crop of Stage I II and III PWP will regret if the cure
 is delayed by even a few years.

 The thought of late stage PD is a frightening one - but the possibility of
 having to face it someday cannot be ignored. No doubt the argument will be
 made that for the newly diagnosed it is all to much to soon.  This is
 possibly true, but I would suggest that the decision then rests with them to
 read or not read such postings - to remain or not remain on this list . If
 we, for reasons of political correctness join with PD in silencing the worst
 afflicted of our community, we betray them - and we betray ourselves.

 Dennis.
 +++++++++++++++++++++++++++
 Dennis Greene 49/dx 37/ onset 32
 There's nothing wrong with me that a cure for PD won't fix!
 [log in to unmask]
 http://members.networx.net.au/~dennisg/
 +++++++++++++++++++++++++++
 So let us tell hope


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