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# 267 Friday, December 15, 2006 - THREE IN ONE: a Request for Assistance, the Suggestion that the Christopher Reeve Paralysis Act May have been Sabotaged, and also a poem. One: The following very short letter is typed by a friend of mine who has Parkinson's disease. I left it in all capital letters, because that is how she has to type. The letter speaks for many of our Parkinson's friends, the unbelievable hassles they go through in hospitals, where frequently the staff do not know what to do for them. And there is a small easy something you can do to help, at the bottom of her letter: help just a little bit with a Parkinson's awareness law. BILL A2007, THE PARKINSON'S DISEASE PUBLIC AWARENESS AND EDUCATION ACT IS FOR THE PEOPLE ---- PEOPLE WITH PARKINSON'S DISEASE. A REGISTERED NURSE THAT HAS PD WAS HOSPITALIZED FOR UNRELATED PD SURGERY HAD COMMENTED THAT HER STAY WAS ''TRAUMATIC AND TERRIFYING.CAREGIVERS, MUST BE TAUGHT THE LIFE-THREATENING NEEDS OF THESE PATIENTS'' ANOTHER......."I HAVE TO REMIND THE NURSE THAT IT IS TIME FOR HIS (THE PATIENT)'S MEDICATION. I HAVE TO STAY IN THE ROOM ALL DAY TO MAKE SURE THE MEDICATION IS GIVEN PROPERLY." ANOTHER....... A PD PATIENT WENT IN TO THE HOSPITAL FOR A COLONOSCOPY----''WAS IN THE HOSPITAL FOR 4 MONTHS DUE TO THEIR COMPLETE UNPREPAREDNESS FOR THE POST-OP PARKINSON'S PATIENT.'' I CAN GO ON AND ON........... SO, WHERE EVER YOU LIVE, COULD YOU KINDLY SEND A NOTE OF SUPPORT FOR BILL A2007 (NEW JERSEY STATE LEGISLATURE) PARKINSON'S DISEASE PUBLIC AWARENESS AND EDUCATION ACT The letter should be addressed to: Assemblyman Herb Conaway Chair of The Commission of Health and Senior Services NJ State Legislature Delran Professional Center Suite 125 8008 Route 130 North Delran, NJ 08075 E-MAIL ADDRESS: [log in to unmask] (PLEASE NOTE , THIS IS ASSEMBLYMAN CONAWAY'S ASSISTANT) I SINCERELY THANK EVERYONE! Claire S. (P.S. from Don: all that is needed for the above is a short, one or two sentence letter-something like: I support the Parkinson's Awareness Act, because these folks suffer too much already! - that's really all that is needed. Number Two: The Christopher Reeve Paralysis Act may have been killed by behind-the-scenes dirty politics. Here is a letter from my friend John Smith, advocate for stem cell research and one of the leaders of UNITE 2 FIGHT PARALYSIS: ". the Republican-controlled Senate once again slammed the door on an excellent piece of legislation, The Christopher Reeve Paralysis Act. Senators have anonymously sandbagged this carefully crafted bill twice. Apparently someone has a grudge against Christopher Reeve. Why, you ask, would anyone do so? Is this personal? Yes, it is personal against Chris. Chris Reeve was a liberal, Hollywood, stem cell advocate... The Senator(s) are unknown because they can object anonymously and by a procedure called a "secret hold," delay a bill from being voted upon. THERE WAS NO VOTE. The CRPA, due to the heroic efforts of grassroots advocates, managed to once again pass the House by unanimous consent. The Senate had an opportunity to make the CRPA part of a package attached to the NIH re-authorization to be voted on next spring. The House approved it Friday night, December 8, 2006, and it moved onto the Senate docket. It was presented but failed due to an anonymous objection. The tactic of objecting to the call for unanimous consent suggests an individual wants more discussion. The implied threat is a filibuster. "Secret holds" work great in a lame duck setting or just prior to a recess because the Senators want to go home. There is no interest to eyeball each other and determine who the culprit(s) might be. The committee chair just claims they have run out of time. I am certain there are suspicions as to who "held" the bill, but "poof" everybody has gone home. To this day it is not known who killed the CRPA in 2004. Nor is it likely the bill killer will be identified this year. What we do know is that this heartbreaking dismissal of years of advocacy effort by those who are paralyzed and their families has come to naught. Nonetheless, the legislation must go forward in the next Congress. The advocates are empowered for attaining attention without the presence of celebrity. They have champions in the Senate and House who will continue to provide support. Finally, they have the legacy of Christopher Reeve and his wife, Dana. That legacy should be honored with the passage of legislation in his name. Here are the links: http://www.laweekly.com/deadline-hollywood/8971/-wheres-their-sense-of-decency/ http://unite2fightparalysis.org/FactsFigures/CRPA%20Summary%20of%20Legislation.pdf (Note: the first link is a crude (some bad language, be warned) but powerful statement about what happened to the 2004 CRPA, also apparently backstabbed; the second is a clear, easy to read explanation of what was lost.) Now, number three, the poem. (Shakespeare's reputation is probably secure!) OF STEM CELLS, AND WINTER If I had only two short words, for the emotion that all may turn out well, The hope of Spring in bleakest Winter, the two words are.stem cell. Look! There she is, in the hospital bed, Tubes in her veins, the doctor's shaking his head; It's over, he says, no more can be done, We tried our best. your loved one's race is run. My poor little sister, head bare as if shaved, The cancer has killed her, she cannot be saved? She's had chemo, even arsenic, nothing has worked, No medication untried, no heart's prayer shirked. There she lies, un-responding, on her side, the fetal position, What's next? To pull the plug, is that a pending decision? Like a candle blown out, her life's flame has gone dark, But wait! What is there, a tiny flicker, a spark? Red dot on candlewick, bend close and gently blow, Let oxygen ignite the spark, and our hopes begin to grow; Her brother's blood was taken, eleven exhaustion and pain; Needles spiked inside both elbows, metal shoved into his vein; Blood was taken from his body, filtered, and put back, Something taken from him gave our sister a way to attack. The woman in that bed sat up, her eyes awoke, their shine returned; The flame of her life reinforced, the fire was returned. Stem cells were discovered, fifty years ago, I'm told, Like a sword to fight the dragons with, for a hero, brave and bold. Who were the scientists who struggled, what was their sacrifice? I do not even know their names, but I am glad they paid the price. But what if their funds had been cut off, what if they had been told no? I had another sister, once, not so very long ago. She also lost her hair, her body gaunt, ravaged by the disease. At the end, she had much pain, which only drugs could ease. She had another disease of the blood, leukemia; and she died. She said, "I love you," to her little brother, and that was all, she died. She was twenty-four; it was not right. Still another reason why we fight. Restrictions political, are costing lives each day. The suffering increases, the politicians play; Their obstructionism is hard to understand, impossible to explain; Like jet engines denied, condemning all to bi-planes. But I saw my younger sister, in a resteraunt, last week; There was something different about her, something new to seek; What was it her smile unique, her countenance so fair? Her husband had his around her-and then he touched-her hair. Her hair was growing in again, and I cannot tell you why, The sight of those short curls, will remain with me till I die. It was a symbol of new hope, like grass buds breaking frozen earth; It was my sister and all our hopes- stem cells, new hope, rebirth. If we never give up, we can only win, or die. And everybody dies, eventually, so why should we not try? Email Don at: [log in to unmask] L ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn