New national health initiative focuses on Parkinson's patient engagement - The Explorer: Health & Wellness

New national health initiative focuses on Parkinson's patient engagement

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Posted: Monday, August 11, 2014 10:00 pm | Updated: 1:33 am, Tue Aug 19, 2014.

(BPT) - Each year, 60,000 people in the U.S. are diagnosed with Parkinson’s disease (PD), a chronic, degenerative neurologic disorder that each person experiences differently.

For patients and families today and in the future, living well with disease requires recognizing that we play an important role in our own health. Patient engagement – the proactive decisions we make about our own health and wellness, such as seeking care from the right doctors and health professionals, strengthening a relationship with a physician, or seeking deeper connection to a patient or caregiver community – can play a critical role in helping us feel and live better.

Parkinson’s patients experience a widely variable range of symptoms and an unpredictable rate of progression. This variability can make navigating the disease difficult, particularly when many patients report feeling unsure of the best kind of doctor to see, the right questions to ask, or how to stay positive.

A recent Harris Poll survey of Parkinson’s patients, caregivers and physicians, conducted on behalf of The Michael J. Fox Foundation and AbbVie, revealed that many Parkinson’s patients and families experience knowledge gaps in managing their disease. For example, only about half of patients and caregivers reported feeling informed about how to tell if their Parkinson’s disease is progressing. Fewer than half of patients and caregivers feel informed about where to turn for support or information about PD. A list of topline results from the survey, as well as a complete methodology, including weighting variables, is available at www.partnersinparkinsons.org.

To help address this gap, The Michael J. Fox Foundation and AbbVie have launched a national health initiative called Partners in Parkinson’s, which aims to empower Parkinson’s patients and caregivers with the knowledge and resources they need, including the first-ever online tool to help families locate a movement disorder specialist (a neurologist with specialized training in Parkinson’s disease), as well as the opportunity to connect with one-on-one support from a Parkinson’s Disease Advocate.

Full-day, no-charge Partners in Parkinson’s events across the United States put Parkinson’s patients and doctors in the spotlight as they lead in-depth panel discussions on living well with Parkinson’s disease. Resource fairs showcase local Parkinson’s health care providers, support and exercise groups, and political advocacy organizations.

“We’re excited to be connecting with patients and caregivers around the country –  some of whom we’ve met before, but many who are new to us and have never had a chance to be at an event like this ” says Debi Brooks, co-founder and executive vice chairman of The Michael J. Fox Foundation. “And we’re seeing how once folks come out, they’re amazed at the information and support that’s available to help them live well at every stage of Parkinson’s.”

To learn more about Partners in Parkinson’s, including a full list of cities and dates of Partners in Parkinson’s events, visit www.partnersinparkinsons.org.

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