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Claire Salamon is my "virtual" Red Lobster luncheon companion. She is a very special lady who has been an unrelenting advocate for people with Parkinson's disease. If after reading her story you want to help her causes by writing letters, please email me [log in to unmask] Claire's Parkinson advocacy began in 1997 when she met Barbara Schirloff at a PD support group meeting at the Robert Wood Johnson University Hospital in New Brunswick, New Jersey. This led to lobbying for the Mo Udall Bill in Washington, D. C. where she met Joan Samuelson and others who were there when the bill was passed. In 1998 Claire volunteered for the Parkinson's Unity Walk in New York. She and her children, Susan and Eric, had the job of setting up and taking down about 200 folding chairs. The jobs changed each year thereafter and led to public announcements on the radio. Claire disseminated Parkinson's Unity Walk brochures even out of state. The highlight of her volunteer work with PUW was in helping nationally-renowned science and health writer Earl Ubell publicize the Parkinson's Unity Walk. Claire became a Board Member of the New Jersey Chapter of the American Parkinson's Disease Association as Second Vice President in the late 1990's. Today she is First Vice President. Being a guinea pig in a drug trial can be dicey. In 2000/2001 Claire was a participant in the famous aborted Amgen AMG 474 clinical study to test the safety of the drug. She was only involved for six months and reports signs of trouble with the trial in that she had a bug (a gnat or fruit fly) baked in one of her pills and received a questionnaire for a different disease than Parkinson's. She wondered who was in charge and wasn't told until after a year after the study that she had had the highest dose of medication. It was also impossible to get a civil response from Amgen to her many questions. Nevertheless, she participated in three more clinical studies and was one of four recipients of The Excellence in Service Award from the Robert Wood Johnson University Hospital PD Info and Referral Center. In addition to having Parkinson's, Claire has been hospitalized for several surgeries including spinal cord injury. She learned first hand what most of you already know: there is a great need for education of professional healthcare and civil service providers regarding treatment of Parkinson's patients. With the help of Ivan Suzman and Lillian Scenna, Coordinator of PD Info and Referral Center in Maine, Claire developed a PD Bill proposal based on the Maine model. Two members of her local assemblyman met with her, went over the proposal, but kept putting her off. It wasn't until 2003, when she became a member of Sayrevillle's Commission for the Disabled attending one of the organization's meetings, that she met a State Senator who seemed receptive to helping her with the bill. Two months later his office called her and told her she had not been forgotten and to call them if she didn't hear from them in two months. When she followed up, Claire was given the "don't call us, we'll call you" treatment by a smart-mouth young (?) chick. That was two years ago. Despite the inaction and rudeness of this State Senator's staff, Claire got invited to parties highlighting stem cell research and the governor's election in 2005. She met some great people such as Dr. Wise Young, stem cell scientist, US Senator Frank Lautenburg's executive staff, New Jersey Governor Corzine, and most importantly, Congressman Rush Holt, who was PD-knowledgeable and eager to listen and help. A2007 is presently on hold in the Office of the Commission of Health and Senior Services. This bill contains a provision that would make training about recognizing Parkinson's disease symptoms mandatory for police officers who answer 911 calls. Claire is trying to convince the Chairman of this commission to take action now and put this bill on his agenda. She is also working with Meg Duggan of Missouri to make Meg's Parkinson's Disease Education Kit for Healthcare Professionals available throughout the U.S. and Claire's Parkinson's Disease Public Awareness and Education Act A2007 legal nationally. Claire had an idea for a US Postage Stamp about three years ago. Her idea is being considered. But nothing is easy for Claire. Her proposal asserts that "Awareness is the basis for knowledge in understanding an indivivdual with a chronic, incurable illness that eventually brings about disabilities to the patient and severely impacts his entire family. Funding is essential for the research that gives us hope for cures. It is important that the public recognize and respect people wih disabilities. I have never seen a postage stamp dedicated to honor the people that must endure thse nasty, horrific diseases and injuries." There would be 4 stamps: ALS (Lou Gehrig's Disease), Huntington's Disease, Parkinson's Disease, Spinal Cord Injuries. Currently Claire is writing yet another letter to Assemblyman Herb Conaway, Chairman of the Commission of Health and Senior Services, telling him that she and friends wish to be present at the Commission hearing for A2007 to give testimony of true life and death stories, unnecessary anguish and pain a PD patient and family endured due to the "innocent" ignorance of a professional healthcare provider. It is easy to give up when your objectives are not fully realized. It is harder yet to keep trying, especially when, like Claire, you have Parkinson's disease and your mother was diagnosed with a mild form of PD in 2000. Her unwillingness to give up neither her sense of humor nor her crusade to better the lives of people with Parkinson's disease makes her a formidable fighter not only for herself, but all 1.5 million of us. Ray ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn