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-----Original Message----- From: Jay Henkelman <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, January 22, 1999 8:32 AM Subject: Another Young PWP---some thoughts 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? 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.