This is a multi-part message in MIME format. ------=_NextPart_000_001F_01BE45E1.B3A13FC0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable 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 ------=_NextPart_000_001F_01BE45E1.B3A13FC0 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable <!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD> <META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR> </HEAD> <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> ------=_NextPart_000_001F_01BE45E1.B3A13FC0--