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Activist presses state to OK Parkinson's bill Police would receive mandatory training on recognizing symptoms BY MICHAEL ACKER Staff Writer SAYREVILLE - As someone who lives with Parkinson's disease, Claire Salamon believes a new state law is necessary to raise public awareness and educate law enforcement on the symptoms. Police officers in particular, Salamon said, should know how to recognize when someone is in an "off" state due to Parkinson's disease, and just how to handle that situation. And it's all too easy to reach the off state, which can result in profound shaking or the inability to perform a given action. "It's a difficult disease," Salamon said. "So many little things are involved, like medication; you must take it on time. Most other medication, if you take it a half an hour later or earlier, it will not make a difference, as long as it is in your body. [With Parkinson's] if you are on a schedule for every three hours, you have to take it or the medicine just will not work." Parkinson's is a debilitating and incurable neurological disorder that causes such symptoms as slowness of movement, rigidity, poor balance and tremors. It is estimated that 1.5 million Americans have been diagnosed, while another 1.5 million have PD but have never seen a neurologist. Salamon is advocating passage of a bill known as the Parkinson's Disease Public Awareness and Education Act, now in front of the state Legislature, which calls for the development of a public outreach campaign, educational materials, and training programs for health care providers, police, firefighters and social services and emergency medical service providers. A lifelong Sayreville resident, Salamon hopes to see the Parkinson's bill go national if it passes both the state Assembly and Senate. The bill is currently in a holding file at the office of the Commission of Health and Senior Services in Trenton, and is awaiting action in the Assembly. The bill, she said, would not pose a substantial burden to the state budget. "Most of what is asked for in the bill is done already," Salamon said. Educational literature, Web sites and videos are available for the awareness programs through the American Parkinson's Disease Association [APDA] and Robert Wood Johnson University Hospital in New Brunswick. Salamon, who has been with the APDA for five years, noted that most of its members are personally affected by the disease. "They are all such great people," Salamon said. "I have never met a harsh person that has Parkinson's disease. Everyone seems to be of a kind and gentle nature." Robert Wood currently runs programs on Parkinson's to educate people and correct any misconceptions they may have of the illness. "Many think that Parkinson's disease is an ''old person's disease," Salamon said. "I meet more people that tell me that they were diagnosed with Parkinson's when in their 30s. The youngest that I've met was 19 years old when she was diagnosed. I should mention Beverly, who was diagnosed in her early 30s and recently passed on at 82 years old. That is 50 years of living with PD." Salamon expressed thanks to Barbara Schirloff, of East Brunswick, whom she credits for getting her interested in advocacy and helping her begin this endeavor with the bill two years ago. Salamon was also thankful to Elizabeth Schaaf, coordinator of APDA Parkinson's Disease Information and Referral Center at Robert Wood Johnson. "When I was hospitalized for three weeks for emergency back surgery," Salamon said, "Elizabeth was right there. She [also] handled my correspondence with Senator Frank Lautenberg." Salamon is already making progress on the home front. A training program coming up in the fall will teach Sayreville police about how to recognize Parkinson's disease in an individual who is in an ''off'' state. For instance, the program would help police officers identify a person suffering from Parkinson's who might otherwise be mistaken for a drunk driver. Sayreville Police Capt. Charles Szutkowski said this will be the first time the department is undergoing the Parkinson's training program, which is scheduled for two mornings in September and October. "Claire brought it up to me and I thought it would be a good idea," Szutkowski said. If the Parkinson's bill is approved, it will be mandatory for all New Jersey police to have the same training to help them better handle situations with those who suffer from the illness and to recognize the symptoms of Parkinson's disease. "It is a very good program that has done a lot of good through the years," Szutkowski said. "We are hoping to gain some valuable information to help us assist people with Parkinson's disease. As first responders, we thought it would be a good idea to give our people training on ways to help." The APDA is reaching out to other New Jersey police departments, asking that they participate in the hour-long educational program. "The Sayreville Police Department is first on our training list," Salamon said. Salamon plans to continue lobbying the state to approve the Parkinson's bill and vows to do all she can in the service of those who suffer from the disease, including advocacy of clinical drug studies. She is currently participating in a project survey for the Parkinson's Alliance of Princeton. "If anyone calls me on a survey or a clinical trial, I will do anything for Parkinson's," she said. For information on Parkinson's support groups, meetings and events, call the APDA Parkinson's Disease Information and Referral Center at Robert Wood Johnson at (732) 745-7520. Speakers are available to educate health care professionals, and the hospital also has information on neurologists who specialize in Parkinson's. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn