Remember the Ice Bucket Challenge, when people across social media had ice water dumped on their heads to raise money for ALS (amyotrophic lateral sclerosis)? That groundbreaking campaign raised about 120 million dollars. “To the best of my knowledge,” says nurse practitioner Suzy Hobbs, “the vast majority of funds went directly to research, but nothing trickled down to direct patient care.”
To Hobbs, the clinic coordinator of the Prisma Health ALS Clinic here in Greenville, patient care is what keeps her up at night. Despite managing her own multiple sclerosis, she helps nearly 100 ALS patients, their families, and caregivers all navigate the quick-changing gauntlet of the unimaginable disease nicknamed Lou Gehrig’s.
“Most ALS treatment centers provide excellent medical care,” says Hobbs. “But at our clinic, we recognize that ALS is more than just medicine. Ask any family member—there’s so much to manage. You get used to a new normal, and then tomorrow that’s not normal anymore.”
The progression of the disease is quick: in two to five years, patients typically transform from experiencing mild symptoms to becoming totally paralyzed, all while their minds stay sharp. Many lose the ability to swallow and talk early on. ALS is considered a fatal disease.
Patients and families who are blessed to have financial resources have less stress during their diagnosis, though average out-of-pocket costs can still run $110,000–$115,000 per year after insurance. Clinic patients, who range in age from 17 to their late 80s, receive services like physical therapy, speech therapy, nutrition, and mental health.
I lie awake at night knowing there are people suffering, that a simple tool would make a difference—the difference in existing and living—and I can’t provide it. I lose a lot of sleep.
“But of course, that’s only if they can get there,” reveals Hobbs. “Many have no transportation. Ambulance transport is $500. And some are even trapped in their homes, if not their bedrooms, because of no resources for basic tools like wheelchairs and ramps.”
Without insurance or savings, patients rely on what Hobbs can provide. Even formula for a feeding tube is expensive. She and the clinic team have spent the years since the clinic’s 2014 establishment trying to build up a simple “loaner closet” of tools for patients and their families to borrow. There’s no funding for high-tech tools like $15,000 eye-gaze communication devices, but even items like hospital beds, Hoyer lifts, and reclining wheelchairs turn an intolerable situation into a life with dignity for families touched by ALS.
“Donations toward research are wonderful for future generations,” says Hobbs. “But working with Upstate families on a daily basis—who are coping with so much—underscores the significance of how an angel donor could change things for so many families. I lie awake at night knowing there are people suffering, that a simple tool would make a difference—the difference in existing and living—and I can’t provide it. I lose a lot of sleep.”
Hobbs says she feels blessed to work with Dr. Sandip Jain and Dr. Eduardo Cortez-Garcia, both of whom she calls “amazing physicians.” As referrals to the clinic continue to increase, the need for funding weighs heavy. “Nearly everyone knows someone touched by ALS in the Upstate,” says Hobbs. “The hardest thing for me is that the needs are so many and my resources are so few.”
How does a woman with her own MS to manage worry about hundreds of Upstate residents on a daily basis? “I pray a lot,” she says. “Once, I had to go to three patient funerals in one day. I’d be a goner without God.”
Hobbs diminishes her own challenges when asked how she copes with it all. “I don’t see my disease as remotely significant compared to what an ALS patient deals with,” she says. When pressed, she admits the stress doesn’t help her situation, but her focus will not be deterred. “A respite fund for the patients would be the greatest gift ever,” she says, her hopes directed toward a better, brighter future for others.
Author Libby McMillan Henson lost her father to ALS nine months after he was diagnosed in 2015. He was particularly fond of Suzy Hobbs, his primary healthcare resource. For more information, or to donate to the Prisma ALS Clinic, visit bit.ly/touchedbyALS.