I support the idea of training police about PD.

I had an experience about a month ago, when the police pulled me
over for weaving among lanes and thought I was drunk.  (I had
been having problems with daytime and evening sleepiness and was
apparently dozing off for a few seconds at a time without being
aware of it.  My neurologist has since prescribed Provigil, which
seems to do a good job of keeping me alert.)

What's relevant here is that the officers kept on asking me how
long it had been since I had taken my medication, apparently
going on an alcohol-based model that you're intoxicated for a few
hours after taking a drink.  I explained that the medication made
me better, not worse, but it did not seem to register.


----- Original Message -----
From: "rayilynlee" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, August 11, 2006 12:20 PM
Subject: Claire Salamon in the news


> 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.
>
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