For newly diagnosed MG patient Priscilla Forrester, participating in the 2021 MGFA Walk was more than a chance to raise much-needed funding for the MGFA’s mission. It was a way for her family and friends to truly understand what having myasthenia gravis is all about.
Priscilla’s MG diagnosis was confirmed just as the pandemic hit the U.S. in March 2020. She spent most of that year inside her apartment, adjusting to her diagnosis, her new medications and the reality of pandemic life. After receiving her COVID-19 vaccine, she began to venture out.
“I hadn’t been outside much to see how my medication had been helping me,” Priscilla shares. “Before I started the medication, I could hardly walk a block without getting spent.”
During this time, she found out about the MG Walk. She liked the idea of giving herself a training goal and seeing if she was up for the challenge of a short walk.
She also liked the idea of speaking publicly about what she was going through. Although Priscilla was diagnosed with MG in 2020, she had been suffering confusing and debilitating symptoms for five long years.
“I can recall one time, I was going to a holiday party and I was carrying trays of food in my hands, and my arms just couldn’t hold the weight of it - it was just a couple of pounds. All this food I cooked almost dropped to the floor. I could feel my arms getting weaker and weaker.”
For a time she brushed off her muscle weakness and exhaustion, assuming these symptoms were related to her busy and stressful job. When she finally sought help, she found doctors were dismissive of her concerns. MRIs and other tests were normal or inconclusive – her neurologist suggested physical therapy.
It was three years before a functional medical doctor ran an extensive panel of bloodwork and found her acetylcholine levels were high – a hallmark of MG. Even with these test results in hand, her neurologist was reluctant to believe the evidence. It finally took a switch to a new neurologist who specializes in MG to get the diagnosis and the care she needed.
“I felt like I was suffering in silence during that five year span. I wasn’t even talking to friends and family because I didn’t have words to put to it. I wasn’t really telling anybody.”
For that reason, being part of the MGFA Walk mattered to Priscilla. Walk participants invite friends and family to join their team and walk with them, in addition to fundraising online. Participating is an opportunity to share with your community that you have MG – and tell them how the disease impacts you.
“As soon as I started posting about it, the outpouring of responses from family and friends was overwhelming. Concern, of course, but people really asking about what I was going through. That was very comforting and healing to me. Going on this journey of raising the money and being vocal about it really helped family and friends understand what to do, what the symptoms are – they check on me.”
A cousin helped Priscilla develop an online presence to share her MG story on social media platforms, especially Instagram.
When the 2021 in-person MG Walk was canceled because of the pandemic, Priscilla created her own three-mile loop on the waterfront near her home in Washington, D.C. She invited friends and family to join her, and about 15 came from far and near to walk. She streamed the walk live, so her donors could participate virtually.
Priscilla’s team was a top-ten fundraising team – a huge accomplishment considering it was her first time participating in the MGFA Walk. She was asked to speak at the virtual MG Walk event, sharing her story for others in the MG community.
“Priscilla was our unofficial Rookie of the Year,” says Tasha Duncan, national director of field development at MGFA.
Priscilla says that her decision to do the walk has motivated her through her healing process, both physically and mentally.
“It’s continuing to open doors that I didn’t even know I wanted to open. One of my friends said, ‘You’re doing work that you didn’t know you needed to being doing, and it’s making a difference.’”