A Guide for Those Navigating Parkinson's Disease
Every person diagnosed with Parkinson's disease (PD) embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disease. Parkinson's 360 is a candid and relatable multimedia toolkit developed by The Michael J. Fox Foundation for anyone whose life has been touched by Parkinson's.
On this page you will find a digital book, short films featuring people with Parkinson's at various points in their journey, seven tenets for life with PD and additional tools for living well with the disease.
Content development was led by Rachel Dolhun, MD, vice president of medical communications at the Foundation and a movement disorder specialist. Learn more about the creation of Parkinson's 360 and the sponsorship of MJFF's Disease Education Consortium.
Voices of Those Living With Parkinson's Disease
Getting to Know Parkinson's Disease
The path to clinical diagnosis, common early motor and non-motor symptoms, emotional changes that can occur when adjusting to life with PD and first steps to consider.
Michael S. Fitts, 43, shares the beginning of his own journey with Parkinson's.
Paving a Path with Parkinson's Disease
What to expect when symptoms begin to affect day-to-day activities like work or social interactions, plus new medication considerations and how to enlist allied healthcare professionals.
Jimmy Choi, 40, shares both the positive and negative impact that PD has had on his life.
Looking Ahead with Parkinson's Disease
How symptoms can change and progress over time, when to plan for higher levels of support and ways to alter medication regimens if complications should arise.
Lisette Ackerberg, 79, shares the changes she's made to live well with Parkinson's.
Deep Brain Stimulation
Though it's not right for everyone with PD, this surgical treatment can have a significant impact on complications that arise from Parkinson's medications (including dyskinesia). Learn about the possible benefits of the surgery and what to expect in the operating room.
Richie Rothenberg, 49, shares his experience before, during and after undergoing the procedure.
Seven Tenets for Life with Parkinson's Disease
1. There is no "one size fits all" description of Parkinson's disease
Your symptoms and progression are not like anyone else's. Monitor your own Parkinson's, educate yourself on the disease, and become the top expert on you.
2. Isolation can worsen symptoms
You don't have to manage this disease on your own. A team-based approach (including a movement disorder specialist and allied care professionals) can help you stay physically and emotionally strong. Keep open lines of communication with loved ones and consider joining a support group.
3. Don't Settle
Parkinson's disease varies, and so do treatment options. Designing a regimen that feels comfortable and effective for you will take time and, likely, more than one try. Keep working with your doctor and care team until you get there. Make changes to address progression as needed.
4. Hone your news instinct
The latest research is the latest hope, but in our 24/7 media environment, there's a learning curve to interpreting science news. Find experts you trust, seek out credible updates and commentary, and let go of the rest. Being news-savvy can help you maintain peace of mind.
5. Parkinson's is a non-linear disease
You can have good days, weeks and months even during trying times. Exercising, eating well and staying involved with your social circle, community and activities you enjoy can have a major influence on your Parkinson's path.
6. Get engaged
There are as many ways to contribute to better outcomes for yourself and others as there are people with Parkinson's. Participating in research studies or advocacy, raising funds, starting a blog or support group — however you choose to get involved — can give you a sense of control and help bring us all close to a world without Parkinson's
7. Be prepared
Parkinson's diagnosis or not, we all face certain issues in our later years. Make sure your family understands your wishes for end-of-life care, and put your will and estate in order. Having challenging conversation at the beginning of your journey with Parkinson's can help lighten the burden ad the disease advances.
Tools for Living Well with Parkinson's Disease
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The Michael J. Fox Foundation for Parkinson's Research (MJFF) gratefully acknowledges the Steering Committee members of the Foundation's 2016 Parkinson's Disease Education Consortium, an alliance of biotechnology and pharmaceutical firms who support our commitment to furnishing high-quality educational resources for the Parkinson's community. Corporate sponsorship allows us to create and distribute materials such as the Parkinson's 360° suite while preserving our track record of efficiency in stewarding donor-raised contributions for maximum impact on Parkinson's drug development. We are proud that 89 cents of every dollar we spend goes directly to programmatic efforts in pursuit of breakthrough treatments and a cure for PD.
While MJFF's educational offerings are made possible by the generous support of our Disease Education Consortium, content and perspective are solely our own.