 |
 |
Greg, I hope you have everyone's respect--you deserve it, brother! You should e-mail what you wrote to the most powerful people in Washington that you have access to at this time. Your writing is compelling. It is frightening. Greg, your story ought to get the media talking. I would be more than glad to join with you and support you in a press conference, if that would help end the suffering. How about this idea, folks: let's choose a day and set up An International Day of Parkinsonian Press Conferences, called "TELL IT LIKE IT IS!" Coordinated multiple press conferences with audiences to PUSH for the cure of PD would be the plan. Here is one of the awful things I would tell the world about the PD battle I'm in. I am a 51-year old man, always trying to salvage life from scraps. I am alone, and one step from a nursing home. Out and about, I have been questioned three times, as if I were a drunk. My emotions are right under the surface. I can never be sure from one day to the next how I will survive. I am called a younger, or "Young Onset" PWP,. In reality, I am rapidly aging and forever in battle gear, now in my 16th year up against the PD monster . Although my mental faculties, praise be to God, are virtually perfect, I could still become Jonah, as PD will swallow me right up, if I'm not on alert mode. I have paralysis - a word EVERYONE understands. I am lucky if I get to enjoy slow movement, or bradykinesia. I am totally frozen, like a statue, at times. It is indescribably difficult to be in solitary confinement by choice, waiting, waiting, laying on a daybed upstairs, out of the view of house visitors who would hardly understand, secluded, waiting for movement to return, sweating or shivering, unable to get up. This happens to me daily, whenever a dose of medications wears off too suddenly. Plus, pins and needles pierce my left leg with sharp pains at many sites on my leg, in waves, all at the same time. This sensation is more painful than the rush of pain you get if you brush your finger against a live electric wire. I empathize and agree with you, Greg-- and with Anne Rutherford----let's TELL IT LIKE IT IS. PD is intolerable; only the rare few survive even partially intact. To focus on Hollywood and its glamorous lives is distracting, but at least for me. not as compelling as the stories of ordinary PWP's, TELLING IT like it really is. No rose-colored glasses for me! Ivan Suzman Portland Maine's other PIEN correspondent On Tue, 12 Jun 2001 00:10:51 -0000 "Gregory E. Leeman" <[log in to unmask]> writes, in part: > Dear Listmembers: > > Sometimes I feel like such a negative person. My PD is progressing > rapidly, > my voice barely audible. Manic mood swings are taking away what > little > personality I have left. Always battling with mental illnesses and > the awful > debilitating paranoia and hallucinations. (CUT) ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn