Even though our yearlong #ALLin journey has ended, we continue to seek insights from people most affected by chronic conditions. One way we do this is by inviting patients and caregivers to visit our offices and speak about their health-related experiences and challenges. These visits help us connect the dots between the work we do every day and the people affected by that work. Last Friday, Sally Koppy visited the KC office to talk about what it was like to be diagnosed and live with multiple sclerosis.
Multiple sclerosis (MS) is a chronic, inflammatory and autoimmune disease of the central nervous system that’s diagnosed twice as frequently in women as it is in men. MS degrades the brain’s nerve fibers and can cause problems with movement, coordination, sensation and thinking. Some people call MS an “invisible disease,” because in addition to affecting movement and coordination, it can manifest in ways other people can’t see, like extreme fatigue, muscle spasms, vision problems, forgetfulness and more. It’s estimated that there are more than 400,000 people in the United States living with MS.
Sally — who we met last spring when we attended a walk in support of the MS community — was diagnosed with the disease more than a decade ago. Growing up, Sally’s father had instilled in her the idea that “no one will love you if you’re sick – you must be strong.” And though she’s tried to live her life with her father’s words in mind, she says MS won’t always allow going it alone.
“You can’t just push through MS,” Sally said. “You have to open yourself up and accept help.”
She’s found that help in her husband Kris. When Sally was diagnosed, Kris immediately removed every food item that could exacerbate Sally’s symptoms. He researched treatment options and looked for any way possible to maintain her quality of life. Over time, they’ve figured out what works best – in addition to being mindful of what she eats (they have an organic garden), Sally says she has a team of healthcare professionals that includes a naturopath, a neurologist, a physical therapist, an acupuncturist and a chiropractor. She also incorporates prayer, meditation, essential oils and exercise. “If it works,” she said with a smile, “I’ll use it.”
In addition to telling her own story, Sally spoke about what she’d like to see change among medical professionals treating people who have MS.
“In the 1950’s,” Sally said, “doctors thought they needed to step back and remove feelings from their relationships with patients. Empathy was lost. The opportunity is there for doctors to listen, to use body language to show they’re focused on the patient, to build trust. We have to help them bring their humanity back into their practices.”
We’re grateful to Sally for taking the time visit and share her experiences with us. Visits like hers help us connect the dots between the work we do every day and the people affected by that work.