Exploring Parkinson’s Resources for Inspiration and Information

With Parkinson's diagnoses increasing, people and organizations are stepping up

Lori DePorter avatar

by Lori DePorter |

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In today’s world, information is available at our fingertips. All day, every day, information bombards us.

If you’ve ever used a search engine to research Parkinson’s disease, you’ve likely encountered sites with the latest statistics, which are alarming. According to the Parkinson’s Foundation, a new study reveals a significant increase in the estimated number of people diagnosed with Parkinson’s each year. With previous estimates of 60,000 people diagnosed each year increasing to 90,000, the need for Parkinson’s awareness, education, and advocacy is crucial. 

We rely on familiar foundations, including The Michael J. Fox Foundation, the Parkinson’s Foundation, the Davis Phinney Foundation, and the American Parkinson Disease Association, to provide reliable information. They each have their niche in providing resources that focus on research, patients, exercise, living well with Parkinson’s, and other topics, and they all give us hope. 

However, they’re not alone in the field. Newer organizations are joining the cause, broadening the landscape of Parkinson’s education and awareness. Through diverse platforms, from in-person events to virtual support groups and online webinars, accessible resources are expanding their reach to include rural and homebound Parkinson’s communities. 

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A foundation founded five years ago, the Parkinson & Movement Disorder Alliance, hosted a summit called “ALL IN!” in October. I attended and had the opportunity to share the benefits of rhythm and music with a bucket drumming demonstration. 

The rest of the summit featured keynote speakers and workshops. With my trusty iPad, I took notes that inspired this column. I encourage you to share the following inspirational, fantastic insights and new resources with others.

Some highlights

“We all have a backpack — Parkinson’s or not.” — Jimmy Choi, Michael J. Fox Foundation and “American Ninja Warrior” 

“Stories are data for the soul.” — Robert Cochrane, founder of “Yes, And … Exercise!,” a program focused on improvisation skills and storytelling  

“Treatment does not make the person; treatment unlocks the person’s potential.” — Cynthia Fox, LSVT Global, a complementary therapy program focusing on BIG and LOUD training for physical and speech therapy, respectively

“Life is a performance.” — David Leventhal, Dance for PD, a program that focuses on the benefits of dance for people with Parkinson’s

“What is your superpower? What can you do? We all have something. How do you make it matter?” — Larry Gifford, co-founder of PD Avengers, a global alliance to end Parkinson’s, and “When Life Gives You Parkinson’s,” a podcast that shares stories of people with Parkinson’s

And finally, Bradley McDaniels, a University of North Texas assistant professor, spoke about finding meaning in life and quoted Viktor Frankl: “When we are no longer able to change a situation, we are challenged to change ourselves.” 

In the spirit of the holiday season, and to wrap this up with a big red bow, I will leave you with two final thoughts: Music is medicine, and everyone loves drumming to Queen’s “We Will Rock You.” And we can all be Parkinson’s advocates. Together, our voices can make a difference. Let’s do it!


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

ZINORA MCGRATH avatar

ZINORA MCGRATH

64 years old , I have parkinsons for at least 20 yrs now , would like any new info thanks

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Lori DePorter avatar

Lori DePorter

The pmd Alliance (https://www.pmdalliance.org/) is a great resource, along with some links in the column. If you are interested in a young onset educational online support group through Johns Hopkins, let me know and I will get the information to you. It meets via zoom on the first Wed of the month at 7 PM

Lori

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