My PD Story

Shirley Blackorby of Cary, NC, has taken a creative and extraordinary approach to fundraising for the Parkinson’s Foundation. She has made and sold thousands of COVID-19 masks, raising $15,000 to support the Foundation’s mission and help make life better for people with Parkinson’s disease (PD).

Shirley, alongside her husband Jim, has co-chaired the Moving Day NC Triangle walk since 2019. As a care partner to Jim, who was diagnosed with Parkinson’s in 2009, Shirley is passionate about helping move the Parkinson’s community closer to a cure in her roles as advocate, volunteer and fundraiser.

Shirley recently shared her inspirational story, as well as her advice for people with Parkinson’s and their loved ones.

Q. What inspired your COVID-19 mask fundraiser?

A. As the COVID-19 pandemic descended upon us, the need for masks became evident. I have been active in many sewing activities for charities over the years, from sewing quilt tops for mission projects to making fabric hearts for preemies in the NICU. I knew I could use my sewing skills to provide protective masks and at the same time contribute to the Parkinson Foundation mission of improving the lives of “Parkies.”

After trying several mask styles, I found one that I liked and began making masks using my stash of fabric — initially just for friends and family. That led to requests… and more requests. My employer allowed me to display a basket of masks at her store, resulting in even more sales.

The number of masks I’ve made is approaching 2,000, representing the equivalent of more than 600 hours of effort.

Q. Can you share your Parkinson’s journey and how you became involved with the Parkinson’s Foundation?

A. My involvement dates to the early 2000’s when my sister was first diagnosed with young-onset Parkinson’s while still in her 40’s. Her symptoms continued to deteriorate, and several years later, it was determined that she also had ALS. She passed away in 2013, her mind sharp as ever, trapped in a body that no longer functioned.

In 2009, Jim was diagnosed with Parkinson’s, and I became the de facto caregiver. During the next few years, the disease progressed slowly, and we changed little in our routines, relying on semi-annual visits to the neurologist as our primary treatment. In 2014, Jim retired, and found that less stress did lead to improved health, as did exercise. He joined a local Rock Steady Boxing group, and I found a supportive community with care partners of others in the group.

We also discovered Moving Day and decided that it was something we could help with. Little did we think at the time that we would end up being co-chairs of Moving Day NC Triangle.

Q. What advice would you give to partners of people recently diagnosed with PD?

A. While I am proud of what has been accomplished with the mask initiative, I am also proud to be active as a caregiver. Having now been involved for several years, I can be a resource for other care partners who are new to the diagnosis.

If readers get nothing more from this story, I want them to start with the following:

1. Keep moving — exercise is job #1
2. Be and stay positive — also job #1

The list goes on, but keeping the two “Job #1’s” front and center will help win the battles that Parkinson’s presents every day.

Finding and being active in a support group is a very good way to achieve “Job #1” results and continue to see the glass as half-full.

Finally, my husband loves to take issue with those who declare “it is what it is.” Jim’s view is “it is what we make it.” Our goal is to make life as good as it can be while researchers continue the hunt for the cause of Parkinson’s and the cure!

Looking for ways to support the PD community?

Find a local Moving Day Walk

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