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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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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi Hilary &amp; =
list-persons!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</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!&nbsp; 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.&nbsp; =
However, I'm=20
totally opposed to putting on our &quot;happy faces&quot; or to make =
light of=20
the actual consequences of having this disease while in a media setting =
or other=20
public type forum.&nbsp; The most effective (thus quickest) way to =
achieve our=20
goal,<STRONG><EM> a cure</EM></STRONG>, is to &quot;bring the beast =
home&quot;=20
and drop it off in the neighborhood of our policy makers.&nbsp; 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>&nbsp;</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 &quot;should be&quot; <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> &quot;angel dust&quot; </EM>hanging from his butt!!<EM>&nbsp;=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 &quot;on and off&quot; at different times?&nbsp; =
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?&nbsp; That=20
is our reality!&nbsp; 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!&nbsp; While I am totally empathic to its plight, my =
issue is=20
with the Parkinsons community as a whole.&nbsp; As a group, we always =
have=20
been.........and in essence still are........a lumbering-bumbling giant =
at=20
best!&nbsp; And until very recently, an easy target for the neighborhood =
bully=20
(NIH) to grab our share of the &quot;candy&quot; and run!&nbsp; The time =
has=20
come to throw the &quot;raw meat&quot; of truth out and go for the =
&quot;big=20
picture&quot;!&nbsp; It all comes down to the color of =
<U>green</U>.&nbsp; The=20
equation for attracting research funding is simple.&nbsp; The amount of =
funding=20
made available will be directly proportionate to the degree of =
awareness/urgency=20
we create.&nbsp; Our &quot;happy face&quot; will bring us our cure in =
maybe=20
10-12 years regardless of what we do.&nbsp; Where we can make a huge =
difference=20
is by making sure that we ride the current &quot;wave&quot;.&nbsp; =
Tighten the=20
screws any and all ways possible.&nbsp; Our efforts could translate into =
a=20
savings of 5 to 7 years!!!&nbsp; That would be =
phenomenal!!!</FONT></DIV>
<DIV>&nbsp;</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.&nbsp; =
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.&nbsp; Is this the general perception we =
are=20
allowing the public to grasp?&nbsp; That we move a little slower, shake =
a little=20
but <STRONG>no big deal</STRONG>?&nbsp; 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.&nbsp; My journey has been =
somewhat=20
unique to most in that I waited to the point of EXTREME dysfunction =
before=20
seeking medical help.&nbsp; Why?&nbsp; This would deserve a study via =
its own=20
merit.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</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>&nbsp;</DIV>
<DIV><FONT size=3D2>It might be a shock to the average &quot;Joe&quot; =
that I must=20
take a pill or two every 4 to 5 hours so I can walk.&nbsp; 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.&nbsp; 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>&nbsp;</DIV>
<DIV><FONT size=3D2>Or if I don't take my pills, my gait is like =
dragging a dead=20
limb behind me.&nbsp; What kind of impression would this make on someone =
that=20
you want to impress romantically?&nbsp; And it's going to get =
worse?&nbsp;=20
</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</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?&nbsp; 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>&nbsp;</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?&nbsp;&nbsp; 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.&nbsp;=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
&quot;Booby&quot; prize!&nbsp; Wow, God must have a sense of =
humor!</FONT></DIV>
<DIV>&nbsp;</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>&nbsp;</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>&nbsp;</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.&nbsp; 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.&nbsp; 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 =
&quot;that=20
bad&quot; yet.&nbsp; Nevertheless, I have become an old man with a young =

face.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 size=3D2>Aloha...!</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>Jay Henkelman</FONT></DIV>
<DIV><FONT size=3D2>30/39/49</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>P.S....Hilary, I hope you can pull an idea or two =
out from the=20
above.&nbsp; </FONT></DIV>
<DIV>&nbsp;</DIV></BODY></HTML>

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