Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-16 Sheryl Jedlinski
When asked to be an ambassador for a new health initiative co-sponsored by the Michael J. Fox Foundation (MJFF) and Abbvie — I jumped at the opportunity to be part of this groundbreaking effort, which promises to provide new educational tools and resources to help ensure optimal care for patients at every stage in PD progression.
Success is dependent on patients making greater use of Movement Disorders Specialists (MDS) — neurologists with advanced training in PD and up to date knowledge of cutting edge PD treatments and clinical trials. Currently, less than one-third of those diagnosed with PD see a MDS, meaning the majority likely are not receiving the best care available to them.
Explore the new “Partners in Parkinson’s” web site (http://www.partnersinparkinsons.org) to find new tools to help you locate a MDS near your home and empower you in the overall treatment process. Register to receive ongoing updates, information on events (including clinical trials) in your area, and access to new tools and resources as they become available.
Those who have long advocated for patients to have a seat and a voice at the table where decisions are made about our healthcare needs, should appreciate that this initiative is patient-centered, designed with patient input to benefit patients. Grab a seat before the music stops.
Once again, MJFF has stepped up to the plate and shown its willingness and ability to lead in research and beyond. As patients and care partners we must publicly recognize this and continue to urge all the national orgs to combine into one community working towards one common set of goals.
Small but mighty, the Parkinson’s community is bound together by a common thread — a progressive, incurable “designer disease” that affects no two of us the exact same way. Sidelined way too young, and feeling marginalized, many of us seek opportunities that will allow us to apply our experience, skills, and knowledge to leave the Parkinson’s community a better place than we found it. Partners in Parkinson’s may just be our best opportunity yet.