Unpredictability is part of life. You plan for what you can, brace for rainy days, and pray for strength to endure the unexpected. Daryl Wynne was marked by this mantra from a young age. Early in her childhood, after her mother died, she was sent to live with her grandmother in rural Charles City, Virginia. There, she and her sister Janice were raised alongside cousins and relatives in a home that was always open to those fallen on hard times.
“I remember going out there as a kid and hearing them talk about how they grew up,” recalled her eldest son Micheal. “It was hard to imagine so many people living in that house.”
After meeting her husband Gilbert, Daryl left for neighboring Williamsburg, where the couple raised their three boys—Michael, Jeff, and Allen. The generosity she saw modeled early on would become a central tenet of her life. Daryl had a particularly soft spot for young people. From serving on nonprofit boards and co-founding a community softball league to organizing field trips, financing college application fees, and hosting neighborhood cookouts and Dallas Cowboys-themed parties, her home was a refuge, even after becoming widowed. Her heart for community was always on display, but no one could have foreseen that her vibrant life would quickly transition into legacy after a devastating diagnosis of ALS.
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, deteriorating muscles, leading to difficulty walking, speaking, swallowing, and eventually breathing. According to the National ALS Registry, roughly 5,000 cases are diagnosed every year, making the condition relatively uncommon. The rarity of the disease is both a blessing and a curse. “Because it’s so rare, few hospitals have infrastructure in place for ALS care,” said clinical researcher Dr. Amber Michelle Hill. “It is therefore often less prioritized in terms of research and funding.”
For ESSENCE, I spoke with Dr. Hill, whose tech-enabled company Research Grid, leverages AI, machine learning, and cutting-edge tech to automate clinical trials. I also interviewed Micheal Wynne, who gained first-hand expertise when his mother was diagnosed in 2013. They offered their insights to this practical, lived-in guide for caretakers and individuals newly diagnosed with ALS.
The Double-Edged Sword of Awareness
ALS presents a unique and daunting set of medical hurdles. The progressive muscle weakness it causes steadily robs patients of their independence, making even basic tasks a struggle. Difficulties communicating and eating can further add to patients’ frustration and isolation.
Daryl experienced it all. However, despite her deteriorating physical health, her mind remained sharp. Like many ALS patients, the contrast was double-edged. “It’s the most cruel part of this disease,” Dr. Hill said. “In terms of brain function, they are the exact same person as they were before, so they’re actively watching their bodies deteriorate and reject them, fully aware of what’s happening. It is difficult, and heartbreaking, not only for them, but their families, and everyone involved.”
Talking openly and honestly with doctors and specialists about the course of the disease can help prepare for potential challenges. According to Michael, knowledge is power. Understanding the unique challenges of ALS helps patients and their loved ones navigate difficulties with greater knowledge, support, and a sense of empowerment.
The Financial Burden of ALS: Resources, Support, and Long-Term Care
The financial impact ALS has on families can be significant, with costs ranging from $150,000 to $200,000 annually for treatment and care. Planning for the unexpected is crucial.
Still, even with excellent health insurance—which Daryl had, most policies have significant limitations. It’s a lesson Micheal learned the hard way and one he educates others on every chance he gets: “If your loved one is diagnosed with ALS or a 100% disability illness, and they need long-term, around-the-clock care, most policies do not cover that. What you need is Long-Term Care, and it’s not one of those things you can get after diagnosis. So, if you walk away with nothing else, take this—pick up an LTC policy for yourself and your family just in case.”
Many families make significant lifestyle changes, such as selling their homes or taking on debt to bear the financial strain of caring for a loved one with ALS. Michael estimates a quarter million dollars spent out of pocket, some of which was thanks to the generosity of community, family, and friends. While he says he wouldn’t change his choice to help his mother live out her last days in the most possible comfort, there is no denying that the financial pressure can strain budgets and take a significant emotional toll.
For caregivers or individuals recently diagnosed, there are organizations eager to help. “The communities impacted by motor neuron diseases—ALS and Lou Gehrig’s—tend to be quite welcoming. They are one of the most tight-knit and supportive communities I’ve seen,” Dr. Hill shared.
Consider tapping the ALS Network or contacting your local ALS Association chapter to explore options for guidance and financial support.
The Power of Connection: Technology, Community, and Family Support
Before her early retirement due to ALS, Daryl was a successful Assistant Vice President and Branch Manager at TowneBank.Dr. Hill emphasizes the importance of maintaining connections for ALS patients, particularly those who, like Daryl, are highly social.
“To the extent possible, it’s essential to help them remain socially connected and creatively engaged—be it through visits from loved ones and kids, or via social media,” she explained. “In the most resilient cases I’ve seen, they are still functioning members of society.”
Technology, such as Tobii’s innovative eye-gaze speech-generating device, can be a valuable tool in helping ALS patients stay connected, especially as the disease progresses and communication becomes more challenging.
With guidance and support from their local ALS Association, Michael says he and his brothers were well-equipped: “They basically gave us consultations on what we needed to do. We needed to bring in a hospital bed and all these portable devices to help her move around. We had a speech-generating device to help her communicate because, at this point, she had a tracheostomy installed, so her speaking needed to come through a device.”
Beyond the vital role of patient support groups, the power of community was crucial in offering holistic support for Daryl through her three-year bout with ALS. Among the many local faith communities that offered benevolence were First Baptist, where Daryl was a member, and New Zion, where Michael attends.
Family and friends stepped up in major ways, volunteering for housekeeping, meal preparation, and even taking on caregiving shifts. One of Daryl’s many “adopted” children, Keith Stephens started a foundation to help alleviate the family’s medical expenses. He also petitioned the county to declare an official holiday in her honor. “I can truly say the community showed up for us,” Michael said of the generous support. “Mom was able to see the harvest of all the seeds she and our Dad had sown for all those years.”
Contending with ALS isn’t easy and answers aren’t one-size-fits all, but with the help of family, friends, and community, it is possible, day-by-day, to contend.
