This is a test to see if I can send this through without problems. If it
works, the problem in my case was believing WordPerfect is.If others have
experienced messages garbled at the receiving end it may be the word
processing program that is doing it. It substituted things like =93 or =94
for beginning & ending quotes. I guess my lesson is to use NO special
characters in a word processing program that claims it will save the file as
Ascii text but rather obviously did not convert all characters. Sorry about
that.
================================================
I am new to this service. I received a warm Welcome letter from Barbara which
I really appreciated. (Thanx Barbara.) I've also had the privilege of
learning through reading all the topics and letters I've been monitoring
daily. All of you have helped to encourage me in the wonderful, simple fact
that I'm not alone. (Thanx to all of you!)
In case there are other new people to the service, I decided to pull some
pages from my Journal and share some of my thoughts and a project I m working
on: a beginning Glossary I m putting together for PD named PD Glossolalia
with some intentional
tongue-in-cheek irony. I've also personally decided to call PD the paradox
dysease. As I've learned about it through reading, the medical community, and
through this service, I see many, many paradoxes at work with this nasty
affliction. A personally encountered paradox in dealing with PD for me is: If
the afflicted is depressed, build them up with hope of who can still do what
at this stage. If the afflicted is hopeful, tear them down with the
you-also-need-to-start-remembering and coping-with-progressive-loss
realities. Perhaps that is why I so enjoyed (and needed) Art's cockeyed,
pollyanna, dare-to-be optimistic, inward-extrovertedly-expressed outlook on
life with the accepted and acceptable aid of Sinemet for the present and a
cure within our foreseeable lifetime! (Thank you, Art, *smile* for the
tears--after reading your open I love Sinemet I was finally able to openly
grieve and gingerly start the long process of dealing/coping with PD.)
Btw, I never intentionally rename something without first looking for
definitions of the words I m considering. In this case, used my work copy of
Merriam Websters Collegiate Dictionary, Tenth Edition for the definitions. In
re-naming Parkinsons Disease, I substituted PARADOX for Parkinsons in honor
of the paradoxical aspects of Parkinsons as I am trying to sort through what
is happening now, what can I do about it, and the worst paradox of all: the
many pluses balanced against the many minuses of the current available
medicine regimes. I chose to spell Disease as DYSEASE in order to visually
gain the attention of others to the human factor of living with PD. I
discovered the following in my handy Websters:
Two of Webster s definitions for paradox are [followed by my personal
re-wording]:
2 c) an argument that apparently derives self-contradictory conclusions
by valid deduction from acceptable premises [i.e.,certain medicine that has
benefits coupled with detriments that is research-based on many researchers
knowledge of what PD
patients lack or have too much of in their biochemistry make-up]
3) something or someone with seemingly contradictory qualities or phase
[i.e., current medicine for me with the contradictory pros and cons of
certain PD medications]
For the coined word dysease, Websters defines DYS as:
1) abnormal
2) difficult
3) impaired
4) bad
...while it defines EASE as:
1) the state of being comfortable: as
a) freedom from pain or discomfort
b) freedom from care
c) freedom from labor of difficulty
d) freedom from embarrassment or constraint
e) an easy fit
2) relief from discomfort or obligation
3) facility, effortlessness
4) an act of easing or a state of being eased
I may not be classed with the experts as far as names go, but it seems to me
that PARADOX DYSEASE fits what is happening to me better than the medical
name classification. Paradox dysease reminds me and others who aren't
afflicted
with it of the human factor involved: We are people who are afflicted with a
whole body problem that current medicines address with a double-edged sword
and that our Congress in the past has only considered as worth $26 a head for
research. I feel our worth is more than $26 a head. (If for no other reason,
our head problem affects our arms, hands, torso, legs, and feet, too. Also,
don't forget to add in our fingers, thumbs, and toes--surely all these are
worth some extra value!)
I, for one, am not interested in participating in an inexorable, downhill
slide from a useful, working member of society into an unable to work member
of society with the need to apply for SSI and eventually switch to hospice
care at the end when research is
perched upon a cure within this decade IF the funds are allocated. I truly
don't want to be part of a 6-billion dollar yearly debt. I'd rather see
further funding allocated now to beat PD in this decade and happily watch the
6-billion dollar yearly debt become available for allocation elsewhere
because it is no longer needed for PD.
I am sending portions of this letter to my congressman with an appeal for
support of the Udall bill. If any of you want to use portions of this in
drafting an appeal to your congressman (congressperson?), please feel free to
use any of it with my blessings.
Again, overall and most of all thanx to each of you for helping me to realize
I am not alone.
Llyn :)
