Shirley Bealor drives 120 miles roundtrip to see her movement disorder specialist and 80 minutes roundtrip to her Parkinson’s disease (PD) support group.
More than 10 years ago Shirley and her partner, Elizabeth, visited Calvert County, MD, on a road trip and decided to move there. “Everything was going great,” Elizabeth said. They loved the bay, the seafood and the small-town feel. “Shirley then started having some tremors and tale-tale signs of PD.” It wasn’t long before she was diagnosed with Parkinson’s.
Shirlely’s research led her to the Georgetown Movement Disorders Program, an NPF Center of Excellence, where she has received expert care from day one. This was also where Shirley had A surgical treatment for Parkinson's disease. A special wire (lead) is inserted into a specific area of the brain responsible for movement. The lead is connected to a pacemaker-like device implanted in the chest region. This device creates electrical pulses, sent through the lead, which “stimulate” the brain and control abnormal brain cell activity. surgery in December 2014.
While Shirley saw improvements after DBS, she still lives with a myriad of PD symptoms. The most visible is her worsening gait and posture. She uses a walker to maintain balance and support, but still falls. She finds other PD symptoms even more frustrating.
“My eyelids don’t blink enough thus I had to have plugs placed in my tear ducts to help maintain moisture,” Shirley said. “The invisible symptoms are actually the most frustrating. Food doesn’t move through the digestive system like it used to, swallowing, choking, speech changes, loss of bladder and bowel control – these are difficult to treat and make daily life especially challenging.
Shirley also has dyskinesia and lately, a decrease in energy, but she’s doesn’t let any of it slow her down.
One day in the Georgetown doctor’s office Shirley and Elizabeth saw a poster for Moving Day® DC. They signed up and created Team Tenacity, the name stemming from Shirley’s stubbornness and determination to fight PD.
The retired principals put their pottery hobby to work. Shirley asked potters from across the nation for a pottery donation. They received more than 60 pieces of original, hand-made pottery. “The UPS man hated us,” Elizabeth said. Between pottery sales and donations they raised more than $10,000 for the fight against Parkinson’s.
This year Shirley doesn’t have as much energy and set out to do something less labor intensive. She applied for a NPF grant to create a local PD support group that belongs to the county. NPF agreed, and awarded Shirley the grant. After receiving NPF Parkinson’s educational booklets, Aware in Care kits and brochures, they set out. So far they have:
- Applied and received NPF community grant to create the Calvert County PD Support Group.
- Met with the Office of Aging, CEO and neurologist in the county hospital, all of which are spreading the word.
- Searched for their Parkinson’s community by dividing the county into three sections and hosting meetings at each one.
- Fielded calls and met with people with PD and caregivers on a one-on-one basis to tell them about the support group.
They are now planning to find a central location to host meetings and build their base.
At the first group meeting, three women showed. Two had never met anyone else with Parkinson’s. “They were overwhelmed by having more information, hearing my story and meeting each other. They were almost in tears. It just made it worth everything,” Shirley said.
Shirley and Elizabeth have done their homework by participating in support groups in other counties to see what makes them successful. Their goal is to bring the people of Calvert County new PD resources, speech therapists and group exercise classes, but most importantly support and a sense of community.
Just because Shirley and Elizabeth are starting a support group doesn’t mean they have forgotten about Moving Day® DC. They are currently in the thick of Team Tenacity fundraising. “I like to see how many people are there, and that are just so dedicated – from the volunteers to the care partners who are there with loved ones. Their dedication assures and moves me,” Shirley said.
Shirley and Elizabeth want you to spread the word of the Calvert County PD Support group. For more information visit www.teamtenacity.org or call 410-257-1736. Learn more about Moving Day® DC here or donate to Team Tenacity here.