Empowering Parkinson's Patients to Make Every Medical Visit Count

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Non-Profit Organization PMDAlliance Launches New Tool to Improve Doctor-Patient Communications

"Empowering the patients is of the utmost importance." Salima Brillman, MD

When physicians see patients with Parkinson's disease, there is limited time for a lengthy conversation that may reveal new information or focus on a troublesome change in condition. Time constraints pressure both doctors and patients to speak quickly and directly, but if the patient isn’t assertive or doesn’t know what to say, important information relative to treatment options may never surface.

A survey conducted at in the 2017 World Parkinson Congress in Portland, Oregon, revealed that 22% of people with Parkinson's disease reported that they feel like a burden when they talk about their issues with their physicians. Thirty percent said that they feel like a complainer if they talk about issues with their medication.

“In conversations with thousands of people across the country who are impacted by Parkinson's disease, we recognize a consistent need - to learn how to advocate for oneself during an appointment with the physician,” said Sarah Jones, CEO of the Parkinson & Movement Disorder Alliance (PMDAlliance), a non-profit organization dedicated to enhancing the quality of everyday life for the people it serves.

“Add this barrier to an incredibly complex disease like Parkinson’s and the issue is compounded,” Jones continued. “Every week I speak with someone who has a symptom that may be tied to Parkinson’s disease, but they don’t realize it. Combined with a hesitation to tell their doctor, the result is that they may not receive the full benefits of their doctor’s care.”

To address this unmet need and better prepare patients and their care partners for meaningful discussions with their physicians, PMDAlliance has created emPowered!™, an easy-to-use tool for tracking symptoms and reporting them to the patient’s healthcare provider. PMDAlliance will launch distribution of emPowered!™ at its Learn. Live. Connect conference in Boston on April 27, 2018, when each attendee will receive the tool and training in how to use it. The conference will be held from 9am-1pm and includes breakfast and lunch. To learn more and register for the conference, go to http://www.PMDAlliance.org or call (800) 256-0966.

In addition to receiving emPowered!™, conference participants will learn more about Parkinson’s from two national experts, Laxman Bahroo, DO and director of the Neurology Residency Program at Georgetown University Hospital, and David Shprecher, DO and director of the Movement Disorder Program at Banner Sun Health Research Institute in Phoenix, Arizona. Representatives from leading movement disorders centers will be on hand to provide information about accessing quality services.

Parkinson's disease is a complex neurodegenerative disease, second only to Alzheimer’s in prevalence. Each person experiences their own set of symptoms and as a result, may confuse PD symptoms with other conditions. As Salima Brillman, MD, a Menlo Park, CA movement disorder neurologist and PMDAlliance physician advisor explained, "Thank you so much for all that you do and relaying the vital message about how important education is, how lucky we are to have all of these different treatment options and the platform to discuss them. Empowering the patients is of the utmost importance."

PMDAlliance is a nonprofit organization providing educational conference, conferences for support group leaders, care partner retreats, online education and exercise, and more for people impacted by Parkinson disease and other movement disorders. To learn about free conferences near you or request information about emPowered!™, visit http://www.PMDAlliance.org or call 800-256-0966.

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