When Peri and Chandler Schaefer look back on the first signs that something was wrong, the picture is surprisingly ordinary. Chandler had been an athlete his whole life. He was used to shin pain and figured it was “nothing.” He told doctors that his right ankle moved normally but his left ankle wouldn’t pull back the same way, but no one had answers. As he put it, “I did what any 28 year old guy does, pretend it doesn’t exist and just keep on going.”
Even as symptoms slowly intensified, the idea of ALS felt impossible. “ALS was never mentioned,” Chandler said. Early tests reassured them it was “none of the scary things.” But the uncertainty lingered, and their families finally stepped in. “They told us, something is wrong with Chandler and you guys have to stop dilly dallying and take it seriously.”
The appointment Peri’s father helped arrange at the Cleveland Clinic changed everything. Within minutes, Chandler was diagnosed with ALS. In disbelief, they visited Mayo Clinic, where a second opinion confirming ALS came in just as quickly.
“That’s when reality kind of started to set in,” Chandler said. The couple, who had only been married for a couple of months, went home to New Orleans, sought more clarity, and found themselves navigating conflicting opinions, cautions, and hopes. They recalled that months before, a podiatrist had mentioned ALS to them after watching Chandler walk in church. “We had brushed it off,” Chandler said.
Learning to Advocate While Staying Grounded
Those early months of coming to terms with ALS taught them something essential. As Chandler put it, “We decided this isn’t how my story is going to be written.” He doesn’t avoid the truth of the diagnosis. It’s more that he refuses to let it define the emotional landscape of his life. “I find ways to be happy all the time.”
He admitted that choosing to remain optimistic sometimes looks like denial. “If that’s denial, I don’t really care because it pushes me on every day.” What keeps him going is simple. “There’s a lot more we got going on than for some doctor to give me a death note.”
They have leaned on family and friends who formed what Peri calls an army behind them; the type of people who would drop anything to be at the couple’s side if needed. Chandler said, “I am blessed beyond measure. I know not everyone has that. I am truthfully so lucky that I don’t have to read all the things.” This army is constantly scanning the literature, educating themselves on ALS and sharing relevant information with Peri and Chandler, including the latest research, clinical trials and therapeutic options.
Early on, Chandler dove straight into exploring clinical trials for ALS. Seventy two hours after his diagnosis, he was already on Zoom with coordinators. “What’s going to fix me?” he had asked them.
But with time, their perspective became more nuanced. While they emphasize the importance of trials as the pathway to finding more effective treatments, they also know they have to make decisions that feel right for them. “It needs to be a good fit for the whole family.”
What Great Care Looks Like
Over the past year, the Schaefers have met with ALS clinicians at Cleveland Clinic, Mayo Clinic, Mass General, Duke, and Ochsner, their local clinic in New Orleans. They’ve seen a wide range of approaches. And they know exactly what makes a difference.
Peri said, “It’s so important for clinicians to remember that we’re a real human family and there’s a lot at stake.” What they value most is thoughtful communication and presence. “There needs to be a level of empathy.”
They extend compassion to clinicians too. “I have such empathy for the doctors and researchers because I cannot imagine what it’s like to go to work every day and work in this disease.”
What they hope for is simple: humanity and connection. If there is a message they’d leave with researchers, clinicians, or donors, it is that people with ALS are not data points. “This is our first time having this,” Peri said. “The doctors may deal with this every day, which is really hard, but for us it’s the first time, which is also really hard.”
Clinic visits can feel emotionally heavy for the couple. “Clinic’s a bummer. You know, that’s the only way I know how to put it,” Chandler said. “They only tell you how bad things are going.”
But even that won’t pull them away from their optimistic approach. They both laughed about the joy of receiving Chick-fil-A on clinic days, even if it is just to observe and record motor function.
“Being outside, enjoying life is only a positive,” Chandler said. “Sitting at home and crying isn’t going to fix anything. So why do it?”
Grappling With the Mystery of ALS
The ambiguity of ALS is something they navigate daily. “If every case is different, every case needs to be treated differently,” Peri emphasized. “This disease is not black and white.”
Chandler sees opportunity in the unknown. “I kind of like the mystery of the disease because it gives us hope.” His case is sporadic, with no genetic link. “Just as easy as I got it, why can’t I lose it as easily?”
Hope is not naïve for them. It’s strategic. It’s fuel.
Choosing Joy While Living With ALS
Peri and Chandler are open about the boundaries they set to protect their happiness. They stay connected to nonprofits and advocates they trust, including ALS TDI and Team Gleason. They lean on people who “know exactly what we want, what level to push us.” They’ve met with Target ALS founder Dan Doctoroff and CEO, Manish Raisinghani.
But they’re also careful about how much space ALS takes up in their lives. Peri said, “We deeply understand how precious life is.” They focus on living in ways that feel full and joyful. Having just celebrated their first anniversary, the couple travel and have adventures often including a recent trip to Tanzania.
Chandler added, “Being positive, my attitude, these are things I can control. Aside from walking funny, I don’t think there’s really that much wrong with me. That’s what I choose to think about.”
A Life Bigger Than a Diagnosis
In the end, their story is not about ignoring ALS. It’s about choosing how much power to give it.
“We never want to come across negative towards ALS care,” Peri said. “We are so grateful. But we really just are doing our own thing and are genuinely happy regardless of the hand we’ve been dealt.”
Chandler added, “Why does anything have to change if I don’t want it to?”
