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Hi Hilary & list-persons!
First of all, I'm a strong advocate of painting this disease exactly for =
what it is..........a relentless-progressive monster! We can all make =
light of it between other pwp as that may serve a purpose in helping =
some of us deal with the truth. However, I'm totally opposed to putting =
on our "happy faces" or to make light of the actual consequences of =
having this disease while in a media setting or other public type forum. =
The most effective (thus quickest) way to achieve our goal, a cure, is =
to "bring the beast home" and drop it off in the neighborhood of our =
policy makers. Until there is moderate degree of awareness/urgency/fear =
within the greater population and especially the political arena, =
precious time will be wasted.......tens of thousands will have to endure =
a new diagnosis and tens of thousands more will be denied a cure for =
many unnecessary years to come.
It is my belief that one of the typical symptoms of Parkinsons (fatigue) =
combined with a side effect from levodopa (la la or whatever) combined =
with all the others to varying degrees.............has turned what =
"should be" a very influencial force of one million plus/minus to =
something akin to a charging elephant with a hypodermic full of "angel =
dust" hanging from his butt!! (Thanks, in part, to NIH)
Exactly how effective can one million or so drug addicts be especially =
when we are "on and off" at different times? And finally, when that =
hour or two of levodopa induced euphoria finally kicks in.........do you =
feel like marching in D.C. for Parkinsons awareness or just jumping in =
the tub to enjoy your temporary ability to move a little? That is our =
reality! It is not my intention to detract from all the progress we =
have made over the past few years and there are many people who deserve =
our sincere gratitude! While I am totally empathic to its plight, my =
issue is with the Parkinsons community as a whole. As a group, we =
always have been.........and in essence still are........a =
lumbering-bumbling giant at best! And until very recently, an easy =
target for the neighborhood bully (NIH) to grab our share of the "candy" =
and run! The time has come to throw the "raw meat" of truth out and go =
for the "big picture"! It all comes down to the color of green. The =
equation for attracting research funding is simple. The amount of =
funding made available will be directly proportionate to the degree of =
awareness/urgency we create. Our "happy face" will bring us our cure in =
maybe 10-12 years regardless of what we do. Where we can make a huge =
difference is by making sure that we ride the current "wave". Tighten =
the screws any and all ways possible. Our efforts could translate into =
a savings of 5 to 7 years!!! That would be phenomenal!!!
A good example of the public perception of Parkinsons that has to be =
changed was given to me by my daughter. The other day she emailed me =
and said that sometimes she would try to make her hands shake to see =
what I experience. Is this the general perception we are allowing the =
public to grasp? That we move a little slower, shake a little but no =
big deal? Here are a few of my personal thoughts and frustrations =
throughout my journey with Parkinsons beginning at just 30 years =
young............almost 19 years ago. My journey has been somewhat =
unique to most in that I waited to the point of EXTREME dysfunction =
before seeking medical help. Why? This would deserve a study via its =
own merit.
While I have many problems associated with Parkinsons, I consider myself =
to be extremely fortunate compared to many as my progression, although =
serious, has taken a slow course.
It might be a shock to the average "Joe" that I must take a pill or two =
every 4 to 5 hours so I can walk. And then I can walk (almost normally) =
for only 1 or 2 hours after which my medication starts the downward =
plunge after waiting 30 minutes to 2 hours for it to kick in depending =
what and when I last ate something. Not to mention various other =
problems such as talking, balance, trying to shave, bathe and gain some =
temporary relief from that damned fatigue.
Or if I don't take my pills, my gait is like dragging a dead limb behind =
me. What kind of impression would this make on someone that you want to =
impress romantically? And it's going to get worse? =20
When I bounce around like I'm intoxicated or when I have been ask by a =
police officer how much have I had to drink? Or when I go for a drive =
and find myself breaking with my left leg because it's sometimes too =
difficult making my right leg respond.
Going from a very confident person (intellectually and self image) to a =
state of questioning my self-worth in the context of a =
relationship.........do I have something to offer or am I looking for a =
CG? From a confident individual who use to speak to a couple hundred =
people at a time to literally living in a bedroom....... albeit a big =
one. Floating in and out of moderate depression resisting that =
pill...........knowing that most likely I would loose my libido which is =
one of the few things I still fully possess...............it's almost =
like getting the "Booby" prize! Wow, God must have a sense of humor!
Having one of those rare times when I actually feel almost normal and =
experience thoughts of optimism all to be dashed upon the realization =
that I'm again moving slower and becomming stiff as I begin to shake =
more and more.............and I sure aren't talking romance here folks!
Cognizant of my progressing state as I try 3 times to rise from my =
computer chair before I acheive that small but significant feat.
Or as I choke when taking a drink of something............Or realize I'm =
slowly losing control of various body functions from swallowing to =
moving my bowels............and I want some romance?.........Are we =
talking about one of lifes dichotomies or what?
To be taken out of the mainstream of things just at what should have =
been my prime years. Finding myself in somewhat of a quandary as to how =
I avoid living in a state of near poverty a few more years from now. As =
I feel my body ever so slowly decline, I continue to experience the =
physical and emotional pain but more important, I am empathic to the =
suffering of others........always being thankful that I'm not "that bad" =
yet. Nevertheless, I have become an old man with a young face.
Aloha...!
Jay Henkelman
30/39/49
P.S....Hilary, I hope you can pull an idea or two out from the above. =20
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi Hilary & =
list-persons!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>First of all, I'm a strong advocate =
of painting=20
this disease exactly for what it is..........a relentless-progressive=20
monster! We can all make light of it between <U>other pwp</U> as =
that may=20
serve a purpose in helping some of us deal with the truth. =
However, I'm=20
totally opposed to putting on our "happy faces" or to make =
light of=20
the actual consequences of having this disease while in a media setting =
or other=20
public type forum. The most effective (thus quickest) way to =
achieve our=20
goal,<STRONG><EM> a cure</EM></STRONG>, is to "bring the beast =
home"=20
and drop it off in the neighborhood of our policy makers. Until =
there is=20
moderate degree of awareness/urgency/fear within the greater population =
and=20
especially the political arena, precious time will be wasted.......tens =
of=20
thousands will have to endure a new diagnosis and tens of thousands more =
will be=20
denied a cure for many unnecessary years to come.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>It is my belief that one of the =
typical symptoms=20
of Parkinsons (fatigue) combined with a side effect from levodopa (la la =
or=20
whatever) combined with all the others to varying =
degrees.............has turned=20
what "should be" <U>a very influencial force of one =
million</U>=20
plus/minus to something akin to a charging elephant with a hypodermic =
full=20
of<EM> "angel dust" </EM>hanging from his butt!!<EM> =20
</EM>(Thanks, in part, to NIH)</FONT></DIV>
<DIV><FONT size=3D2>Exactly how effective can one million or so drug =
addicts be=20
especially when we are "on and off" at different times? =
And=20
finally, when that hour or two of levodopa induced euphoria finally =
kicks=20
in.........do you feel like marching in D.C. for Parkinsons awareness or =
just=20
jumping in the tub to enjoy your temporary ability to move a =
little? That=20
is our reality! It is not my intention to detract from all the =
progress we=20
have made over the past few years and there are many people who deserve =
our=20
sincere gratitude! While I am totally empathic to its plight, my =
issue is=20
with the Parkinsons community as a whole. As a group, we always =
have=20
been.........and in essence still are........a lumbering-bumbling giant =
at=20
best! And until very recently, an easy target for the neighborhood =
bully=20
(NIH) to grab our share of the "candy" and run! The time =
has=20
come to throw the "raw meat" of truth out and go for the =
"big=20
picture"! It all comes down to the color of =
<U>green</U>. The=20
equation for attracting research funding is simple. The amount of =
funding=20
made available will be directly proportionate to the degree of =
awareness/urgency=20
we create. Our "happy face" will bring us our cure in =
maybe=20
10-12 years regardless of what we do. Where we can make a huge =
difference=20
is by making sure that we ride the current "wave". =
Tighten the=20
screws any and all ways possible. Our efforts could translate into =
a=20
savings of 5 to 7 years!!! That would be =
phenomenal!!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>A good example of the public =
perception of=20
Parkinsons that has to be changed was given to me by my daughter. =
The=20
other day she emailed me and said that sometimes she would try to make =
her hands=20
shake to see what I experience. Is this the general perception we =
are=20
allowing the public to grasp? That we move a little slower, shake =
a little=20
but <STRONG>no big deal</STRONG>? Here are a few of my personal =
thoughts=20
and frustrations throughout my journey with Parkinsons beginning at just =
30=20
years young............almost 19 years ago. My journey has been =
somewhat=20
unique to most in that I waited to the point of EXTREME dysfunction =
before=20
seeking medical help. Why? This would deserve a study via =
its own=20
merit.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>While I have many problems =
associated with=20
Parkinsons, I consider myself to be extremely fortunate compared to many =
as my=20
progression, although serious, has taken a slow course.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>It might be a shock to the average "Joe" =
that I must=20
take a pill or two every 4 to 5 hours so I can walk. And then I =
can walk=20
(almost normally) for only 1 or 2 hours after which my medication starts =
the=20
downward plunge after waiting 30 minutes to 2 hours for it to kick in =
depending=20
what and when I last ate something. Not to mention various other =
problems=20
such as talking, balance, trying to shave, bathe and gain some temporary =
relief=20
from that damned fatigue.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Or if I don't take my pills, my gait is like =
dragging a dead=20
limb behind me. What kind of impression would this make on someone =
that=20
you want to impress romantically? And it's going to get =
worse? =20
</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>When I bounce around like I'm intoxicated or when I =
have been=20
ask by a police officer how much have I had to drink? Or when I go =
for a=20
drive and find myself breaking with my left leg because it's sometimes =
too=20
difficult making my right leg respond.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Going from a very confident person (intellectually =
and self=20
image) to a state of questioning my self-worth in the context of a=20
relationship.........do I have something to offer or am I looking for a=20
CG? From a confident individual who use to speak to a couple =
hundred=20
people at a time to literally living in a bedroom....... albeit a big =
one. =20
Floating in and out of moderate depression resisting =
<EM><U>that</U></EM>=20
pill...........knowing that most likely I would loose my libido which is =
one of=20
the few things I still fully possess...............it's almost like =
getting the=20
"Booby" prize! Wow, God must have a sense of =
humor!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Having one of those rare times when =
I actually=20
feel almost normal and experience thoughts of optimism all to be dashed =
upon the=20
realization that I'm again moving slower and becomming stiff as I begin =
to shake=20
more and more.............and I sure aren't talking romance here=20
folks!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Cognizant of my progressing state as I try 3 times =
to rise=20
from my computer chair before I acheive that small but significant=20
feat.</FONT></DIV>
<DIV><FONT size=3D2></FONT><FONT color=3D#000000 size=3D2>Or as I choke =
when taking a=20
drink of something............Or realize I'm slowly losing control of =
various=20
body functions from swallowing to moving my bowels............and I want =
some=20
romance?.........Are we talking about one of lifes dichotomies or=20
what?</FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>To be taken out of the mainstream of =
things just=20
at what should have been my prime years. Finding myself in =
somewhat of a=20
quandary as to how I avoid living in a state of near poverty a few more =
years=20
from now. As I feel my body ever so slowly decline, I continue to=20
experience the physical and emotional pain but more important, I am =
empathic to=20
the suffering of others........always being thankful that I'm not =
"that=20
bad" yet. Nevertheless, I have become an old man with a young =
face.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Aloha...!</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Jay Henkelman</FONT></DIV>
<DIV><FONT size=3D2>30/39/49</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>P.S....Hilary, I hope you can pull an idea or two =
out from the=20
above. </FONT></DIV>
<DIV> </DIV></BODY></HTML>
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