I=92m new to this service. I received a warm =93Welcome=94 letter from Ba=
rbara
which I really appreciated. (Thanx Barbara.) I=92ve also had the privileg=
e of
learning through reading all the topics and letters I=92ve been monitorin=
g
daily. All of you have helped to encourage me in the wonderful, simple fa=
ct
that I=92m 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=92m w=
orking
on: a beginning glossary I=92m putting together for PD named =93PD Glosso=
lalia=94
with some intentional tongue-in-cheek irony. I=92ve also personally decid=
ed to
call PD the =93paradox dysease=94. As I=92ve learned about it through rea=
ding, the
medical community, and through this service, I see many, many paradoxes a=
t
work with this nasty affliction. A personally encountered paradox in deal=
ing
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 th=
em
down with the you-also-need-to-start-remembering/coping-with-
progressive-loss realities. Perhaps that is why I so enjoyed (and needed)=
Art=92s cockeyed, pollyanna, dare-to-be optimistic,
inward-extrovertedly-expressed outlook on life with the accepted/acceptab=
le
aid of Sinemet for the present and a =93cure=94 within our foreseeable li=
fetime!
(Thank you, Art, *smile* for the tears--after reading your open =93I love=
Sinemet=94 I was finally able to openly grieve and gingerly start the lon=
g
process of dealing/coping with PD.)
Btw, I never intentionally rename something without first looking for
definitions of the words I=92m considering. In this case, I used my work =
copy
of Merriam Webster=92s Collegiate Dictionary, Tenth Edition for the
definitions. In re-naming Parkinson=92s Disease, I substituted Paradox fo=
r
Parkinson=92s in honor of the paradoxical aspects of Parkinson=92s as I a=
m trying
to sort through what=92s happening now, what can I do about it, and the w=
orst
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 liv=
ing
with PD. I discovered the following in my handy Webster=92s:
Two of Webster=92s definition=92s for paradox are [followed by my persona=
l
re-wording]: =
2 c) an argument that apparently derives self-contradictory conclusi=
ons
by valid deduction from acceptable premises [i.e.,certain medicine that =
has
benefits coupled with detriments and is research-based on many researcher=
=92s
knowledge of what PD patients lack or have too much of in their biochemis=
try
make-up]
3) something or someone with seemingly contradictory qualities or
phase [i.e., current medicine available for me with the contradictory pr=
o=92s
and con=92s of certain PD medications] =
For the coined word dysease, Webster=92s defines dys as:
1) abnormal
2) difficult
3) impaired
4) bad
=2E...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 =93paradox dysease=94 fits what=92s happening to me better than the =
medical
name classification. Paradox dysease reminds me and others who aren=92t
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 =93head=94 problem affects our arms, hands, tors=
o, legs,
and feet, too. Also, don=92t 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 mem=
ber
of society with the need to apply for SSI and eventually switch to hospic=
e
care at the end when research is perched upon a cure within this decade I=
F
the funds are allocated. I truly don=92t want to be part of a 6-billion d=
ollar
yearly debt. I=92d rather see further funding allocated now to beat PD in=
this
decade and happily watch the 6-billion dollar yearly debt become availabl=
e
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 fre=
e to
use any of it with my blessings.
Again, overall and most of all thanx to each of you for helping me to rea=
lize
I=92m not alone.
Lynn :)
