Be an informed patient

People living with Parkinson’s or any progressive, incurable disease owe it to themselves to assume an active role in learning about and managing their condition so that they can become educated, informed, and proactive patients. This includes everything from adopting healthier eating habits and a daily exercise regimen to participating in clinical trials and attending patient education conferences.

Hundreds of such conferences are held across the country every year. Each has its own theme, and features experts addressing topics relevant to the Parkinson’s community.

Sponsors include regional support groups, national organizations, medical centers, and patient advocacy groups.

The largest single day gathering of patients, caregivers, and health professionals in the world is the HOPE Conference in Seattle, jointly presented by the Washington Chapter of the American Parkinson Disease Association and the Northwest Parkinson’s Foundation. Jean and I are proud to have been among this year’s presenters. The conference focus on "providing patients and caregivers with the practical tools to enhance their quality of life," was a perfect fit with the overarching message of our pdplan4life.com website.

Sheryl and Jean were reunited with Dr. Becky Farley (left), LSVT-BIG, and Dr. Cynthia Fox (right), LSVT-LOUD. The two have "helped thousands of people with Parkinson's recapture their voice and mobility, as well as their self-confidence and engagement in life."

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Meeting veteran television and radio producer Dave Iverson was a privilege for Jean & Sheryl. FRONTLINE will run a documentary about PD & Dave Iverson's personal journey with this disease on February 3, 2009.

Patient education conferences will teach you about:

• Tips and techniques to help improve your quality of life.
• The latest surgical options and pharmacological treatments.
• The criteria that would make someone a good candidate for one kind of treatment versus another.
• The latest research breakthroughs and their potential benefits.
• Available resources you can tap into.

You will also have the opportunity to:

• Ask questions of leading physicians and researchers.
• Meet others with whom you may share similar experiences and challenges.

If for whatever reasons you can’t get out to attend a conference, you can bring the conference to you by viewing video and audio versions of conference content on your computer according to your own schedule. Look for webcasts and podcasts on sponsoring organizations’ websites.