Living with Locked-In Syndrome: Patient Stories
Locked-in syndrome (LIS) strips away nearly everything—speech, movement, and even the ability to breathe unaided—while leaving the mind fully intact....
Legally Reviewed By
Attorney Rich Newsome
Catastrophic Injury & Medical Malpractice Attorney
25+ years experience
Locked-in syndrome is one of the most devastating conditions in medicine. A person’s mind stays fully awake and aware, but their body can no longer respond. In most cases, only the eyes still move. Everything else stops working.
This condition doesn’t always happen out of nowhere. Sometimes it follows a stroke that was caught too late. Sometimes it follows a medical mistake that could have been prevented. When that happens, families are left not only caring for a loved one who needs round-the-clock support, but also fighting in court to hold someone accountable. Below are three real cases and the locked-in syndrome verdicts and settlements that followed.
In the fall of 2015, a young athlete from Georgia named Jonathan went to a routine chiropractor visit. Partway through the appointment, he suddenly became dizzy and confused. His condition kept getting worse, and his family rushed him to a hospital emergency room.
Once there, an emergency physician and a radiologist examined him. They ran scans and consulted a neurologist by phone, but somewhere in that process, important details slipped through the cracks:
Jonathan was, in fact, having a major stroke. Because the warning signs weren’t connected, he went without treatment for roughly twelve hours, which was a delay that made all the difference. Today he lives with locked-in syndrome. He can no longer speak or use his limbs, but he can move his eyes and control muscles in his face well enough to communicate. He blinks answers to questions and taps out messages on a keypad using his nose.
Years after the incident, a jury decided that the emergency doctor and the radiologist had failed him and awarded his family $75 million, one of the largest emergency-room malpractice verdicts in Georgia’s history. The verdict included $29 million in economic damages and $46 million in non-economic damages.
The doctor tried to appeal, but higher courts left the verdict standing. That money now helps cover Jonathan’s nursing care and the extensive changes his family made to their home, including a therapy room and medical equipment that once would have only been found in a hospital. We wrote about Jonathan’s story in our book, Locked-In Syndrome: A Guide for Families and Caregivers. Here is an excerpt discussing how Jonathan’s condition continues to affect him and his family.
“His father says there is no real justice for someone who has lost almost everything. The verdict helps pay for care. It does not restore his autonomy. The anger and raw shock have softened over the years into something else. The family focuses now on what they can do. How to keep him as comfortable as possible. How to keep him as happy as possible. How to give him the best life that can still be built inside the limits created by a missed diagnosis and a stroke that should never have been ignored.”
Jonathan’s case isn’t a one-off fluke. Studies suggest that early strokes are missed by doctors a surprisingly large share of the time, in part because symptoms like dizziness or confusion can look like something minor. That’s part of why health experts promote the memory tool “BE FAST” to help ordinary people recognize a stroke in progress:
On New Year’s Day 2019, Amy Geiler fell and struck her head on a piece of furniture. She was taken to a Las Vegas-area hospital, where tests showed her sodium levels were dangerously low — a condition that, left alone, can cause brain swelling, confusion, seizures, or even a coma. Amy also had risk factors, including alcohol use and unusual liver enzyme readings, that made her especially vulnerable if her treatment wasn’t handled carefully.
The danger wasn’t just low sodium, though; it was how quickly doctors tried to fix it. Correcting sodium levels too fast can pull water out of brain cells and cause central pontine myelinolysis, which can result in permanent damage. According to the lawsuit Amy later filed, the treating doctor and other staff at the first hospital didn’t catch that her sodium was climbing too quickly. She was then moved to a second hospital, and the two care teams allegedly failed to properly hand off a treatment plan for her condition.
In the days that followed, Amy’s condition worsened rather than improved. By the end of the first week of January, she had to be moved again, this time in respiratory distress severe enough that she needed to be placed on a ventilator. Her attorney says the damage to her brainstem by that point was permanent, leaving her with locked-in syndrome; she remained mentally aware, but could no longer move her body and could communicate only by blinking.
The lawsuit initially named 11 defendants across both hospitals, along with several individual doctors and nurses. Most reached confidential settlements before the case went to trial, leaving only three defendants for the jury to weigh in on:
After a five-week trial, the jury returned a $47 million verdict. Jurors assigned 35 percent of the fault to the one remaining doctor found liable, while the rest of the blame fell on parties who had already settled out of the case.
While the verdict was $47 million, approximately $35 million of which was for pain and suffering, Amy would only see a small amount of the verdict. Nevada law caps that specific category of malpractice damages at $350,000. Her lawyer aired his grievances, saying:
“This is the worst injury known in medicine, and it’s worth $350,000.”
Her attorney estimated she would ultimately receive somewhere between $4 million and $5 million once the capped damages, medical costs, and lost income were sorted out—a fraction of the $47 million figure. Her legal team has argued that the cap unfairly protects hospitals and insurers.
In the years since her injury, Amy has shown small signs of progress, including some ability to move her neck, and her family has held out hope that she’ll eventually learn to communicate through eye movement.
If a delayed diagnosis led to permanent harm, you may be entitled to compensation. Speak with our legal team today.
Start My Free Case ReviewEmily Willis, a former adult film performer, checked into a rehab facility near Los Angeles in January 2024 to get treatment for a ketamine addiction. According to the lawsuit her mother later filed, Emily had been severely underweight and was already showing troubling health symptoms when she was admitted. The lawsuit alleged that Emily did not receive proper treatment for these health problems.
In February 2024, staff at the facility found her unresponsive. A nurse performed CPR for several minutes before paramedics took over, and it took roughly half an hour more before her heartbeat returned. Because she’d gone without adequate oxygen for an unknown stretch of time, she suffered a serious brain injury. Her attorneys described her resulting condition as resembling locked-in syndrome: she can sometimes open her eyes or make sounds, but cannot otherwise move her body or communicate in any reliable way.
Willis’s mother sued the rehab center and its parent company, accusing them of neglecting a vulnerable patient and failing to act quickly enough as her health declined. The facility denied any wrongdoing, arguing that Willis herself had refused medical treatment and hospital care at the time. Rather than go to trial, the two sides reached a $3 million settlement, which needed court approval since Willis is no longer able to manage her own legal or financial affairs. After legal fees, Willis is expected to receive roughly $1.25 million, and her mother continues to serve as her conservator.
Each of these cases looks different on the surface—a missed stroke, a hospital sodium imbalance, a medical emergency at a treatment facility—but they share a common thread. In every case, a health condition that could have been managed or treated safely was instead missed, mishandled, or caught too late, and the result was one of the most severe injuries a person can experience.
For families living with a loved one who has locked-in syndrome, a settlement or verdict can help pay for lifelong nursing care, home modifications, and communication technology. It cannot restore what was lost. That’s why so many of these families, even after their cases are legally resolved, continue speaking publicly about what happened, hoping it might help someone else’s warning signs get caught in time.
If your loved one was diagnosed with LIS, a locked-in syndrome lawyer at Newsome Law can help you explore your options.