Those with locked-in syndrome are fully mentally present but usually can’t move or speak; Gareth has regained limited movement
Karen is now raising money for an innovative stationary bike that could help him progress even further: “The goal is to have him back home again,” she says
A young father of two’s devastating stroke led to locked-in syndrome — a heartbreaking condition where you’re conscious, but can’t move — but his wife says there may be a treatment that can help him regain his “independence and dignity.”
Gareth Bayley was just 38 when, in April 2022, he began to struggle with headaches every day for a week. The construction professional, who hails from the London suburb of Bexley, chalked it up to stress — but then he called his wife, Karen, to share that he didn’t feel well. She hurried to his job, where she’d learned he’d collapsed and had a seizure, according to Daily Mail.
Gareth continued to have seizures on the way to the hospital, where the next day, doctors confirmed he’d had a stroke in his brain stem. It triggered locked-in syndrome, a devastating condition where someone is fully conscious, but cannot move or speak. It’s rare, but as the Stroke Association explains, it’s usually caused by a stroke in the brain stem.
“He is still him — he's fully there and remembers everything. It's just he can't speak or move. It's like he's trapped in his own body. Doctors told us he would likely never move again, apart from slight eye movements,” Karen said.
“Gareth is a fighter," she continued. "Over the past three years, he has regained some movement: he smiles, he laughs, and his expressions have returned in ways we were told might never happen."
That progress has been encouraging, Karen explains, and inspired them to raise money for a functional electrical stimulation (FES) bike. It’s a personalized stationary bike that sends electrical impulses to paralyzed muscles to help them regain function, per the Christopher and Dana Reeve Foundation.
“We did try to get it funded as he is in a care home, but because it was so expensive, the funding got refused as it wasn't deemed an 'essential piece of equipment.' But to us, it is essential. If I can get him this bike, it will be amazing,” said Karen, who is raising money to purchase the bike via GoFundMe. On the fundraiser, she explains, “Gareth is a fighter. He has regained some head movement, he smiles, he laughs, and his expressions have returned in ways we were told might never happen. Every small step forward has given us hope that more recovery is possible … Every day, Gareth wakes up determined to keep fighting.”
Karen, who shares children Brooke and Jesse with Gareth, explained further that “It would help increase his muscle strength, prevent pressure sores, improve the movement range with his arms and legs, help his joint mobility, and help his muscle spasms,” per Daily Mail. “It could give Gareth the best possible chance at further recovery, independence, and dignity.”
Although he’s currently in a care home, “My husband has expressed that he wants to come home and be with me and the children again,” she said. “The goal is to have him back home again.”
Cara Lynn Shultz
https://people.com/dad-38-stroke-locked-in-syndrome-trapped-in-his-own-body-11780042
Jake Haendel had “everything going for him.” He was newly married and working as a head executive chef in Boston when he received a devastating and life-changing diagnosis.
In May 2017, Haendel noticed that his voice started to become higher pitched than normal. Initially brushing it off, it wasn’t until he started having balance issues that he decided to visit the emergency room on Memorial Day weekend.
Doctors believed he was having stroke-like symptoms, so he was admitted and given IV fluids. Haendel, now 36, had been to the hospital many times before and expected to be monitored for a few hours and then simply sent home with antibiotics. And he was right.
“They were actually about to discharge me when my wife came in and said, ‘You cannot discharge him. This is not my husband.’ She played an old voicemail for them. My voice and the voice I had been using were completely different,” he tells PEOPLE. “So the doctors and nurses and emergency room staff were like, ‘Whoa,’ and ordered an emergency MRI.”
One day later, Haendel was diagnosed with acute toxic leukoencephalopathy (ATL), a rare and often fatal brain disease caused by exposure to toxic substances. He was given six months to live.
“I woke up and there was a whole team of people in the room,” he recalls. “A doctor was sitting on the foot of my bed, put his hand on my knee and was like, ‘Jacob, we're extremely sorry. You have a rare terminal and progressive brain illness.'”
Haendel immediately thought about his late mother, who died of breast cancer when he was 19. He remembered watching her struggle to fight the disease for 10 years before her death, a time where he struggled mentally and turned to drugs to cope.
Doctors told Haendel that in his case, the ATL was attributed to that past substance abuse. “I literally said out loud, ‘I am f—ed.’ My first thought was how disappointed my mom would be in me,” he says. “There were very powerful emotions all at once.”
“I told my wife, ‘I watched my mom die. You shouldn't have to watch me die,’” he adds.
After revealing his diagnosis, doctors pulled out a whiteboard and broke down exactly how Haendel’s disease was expected to progress. The first month he wouldn’t be able to walk, even with the help of assistive devices. Month two, he would be confined to a wheelchair until he’s unable to tolerate it due to chronic pain. By month three, he would be bedridden and lose the ability to eat, swallow and talk. In the fourth and final stage of the disease, he would slip into a coma and eventually die.
“And no one had ever survived stage four,” Haendel says.
Unfortunately, Haendel’s doctors were “right on the money with that timeframe,” and his health took a turn for the worst. “I underestimated the amount of pain I would be in,” he admits, comparing his body to a car that’s gone haywire.
By November, Haendel’s speech was fully gone. He was admitted to the neuro ICU at Massachusetts General Hospital as he continued to deteriorate. Around this time, he slipped into what doctors believed was a coma, which was consistent with the natural progression of the disease.
December 1, 2017 was the first time he heard someone refer to him as brain dead.
“One of the doctors told my wife, ‘We're really sorry Mrs. Haendel, but your husband will not make it to Christmas.’ In my head, I was bummed because I had no illusion that I was going to die. But I'm in so much pain that it was also a relief that this constant struggle was going to be over,” he explains.
“But then I heard them say I was brain dead and it's time to start considering withdrawing life support. I was contemplating, am I brain dead? How can I think, how do I have memories?” he continues. “So even though I was having those thoughts that this is going to be over soon, I was like, ‘Oh, don't do that, I'm still in here.’”
Haendel appeared to be in a vegetative state. However, unknown to his doctors, his disease triggered locked-in syndrome, a rare and serious neurological disorder where damage to the brain stem leads to complete paralysis over all voluntary muscles except for the ones that control the eyes, according to the National Organization for Rare Disorders (NORD). While he can still feel touch, pain, an itch and other sensations, and he is entirely aware of his environment and surroundings, Haendel is “locked” inside his body, as the name of the syndrome implies.
“It was the worst you can imagine,” he explains. “It was like being a prisoner in solitary confinement, but worse. You're totally paralyzed, you can't move, talk or signal. I was just talking to myself in my head. It was more of survival to keep my brain going and kind of talk myself out of a full panic attack.”
“Everything in my body was failing and the one thing that seemed to be fully intact was my brain, which is always strange to me considering I had a brain illness and the damage was really catastrophic,” he adds.
Haendel remained in this state for 10 months, which he recalls being a brutal time. He was transferred to hospice care; however, he was eventually admitted back to the hospital because insurance only covered six months of care.
“I wasn't dying, but I wasn't getting better, which was a frightening thought,” he shares. “I kept overhearing them say I wouldn't make it out of this state. And I was like, ‘Oh my god. I could be stuck like this forever,’ which was actually more terrifying than dying.”
In June 2018, Haendel was transferred from hospice care back to Mass Gen’s neuro ICU. While there, he experienced the first glimpse of hope that he’d come out of locked-in syndrome.
“Around 4th of July, I heard the familiar voice of Dr. Levinson, who was in charge of my complex care. He was like, ‘You guys see that? He's moving something.’ And the other doctors were like, ‘No, that's involuntary.’”
“It was the first time medical staff had talked to me directly in a while. He just said, ‘Hey, I don't know if you can hear me, but if you can, do that again.’ I kind of had this rush go through me and I was like, ‘Wow, this is my one and only shot. I don't even know what I moved, but just do something,’” he recalls. “I tensed up my entire body and I didn't think it was working, but then I heard, ‘Wow, he is actually doing it.’”
Haendel’s doctors immediately brought in a specialist in nonverbal augmented speech therapy, who started working with him regularly to relearn how to blink. Over the next two weeks, he was able to blink. Medical staff then created a system where he was able to communicate yes and no by blinking and sticking out his tongue, which eventually progressed to him using a letter board to create sentences. “The first thing I spelled out was, ‘I can hear you,’” he says.
One day, Haendel recalls overhearing a conversation about moving him to a rehabilitation facility.
“I heard crosstalk of how I wouldn't be accepted because I can't participate in the mandatory three hours of physical, occupational and speech therapy. I could only participate in speech. I started freaking out. I heard my heart machine going off.”
“They were like, ‘Calm down, calm down. Do you want to use the letter board?’ And I just spelled out ‘I can do three hours.’ I heard them say, ‘Oh my God, he's actually tracking our conversations.’ And that was really the moment they realized how intact I was. And that was when I first felt like, okay, they actually know I'm in here.”
Days later Haendel was transferred to Spaulding Rehabilitation Hospital in Boston. “It was very motivating for me and at that point I was like, I am going to do everything in my power to get out of this.”
The next few years were a “very grueling, slow process,” as Haendel went through intense therapy retraining his brain to communicate with his body at Western Massachusetts Hospital.
“I thought I'd been through the worst. Not that it was any worse than being locked in, but it was a new type of pain that I hadn't experienced,” he explains on his recovery. “It was quite bad, but I kept telling myself if you want to get out of the hospital, if you want to have a life again, this is what it takes.”
By 2019, Haendel started coming out of his paralysis and making baby sounds. The following year, he started talking in sentences and was able to get out of bed and into a wheelchair for the first time.
In December 2020, he officially returned home and has since been doing outpatient therapy, which he will continue as his recovery remains ongoing.
“Now, I'm walking with a walker at home. I can also transfer in and out of cars. I navigate my community on a scooter, but in therapy I'm using a cane. I can also feed myself and hydrate myself,” he says. “In 2021, I was still not able to take care of myself whatsoever. And in the last year I've been able to take care of myself.”
Haendel, who is now divorced, says it’s unbelievable that he’s come so far in his recovery. He’s been sharing his journey on social media to help others understand the importance of determination when things get tough. The 36-year-old also co-founded an accessibility-focused app, Ahoi, which helps users find places that meet their specific needs like accessible parking, entry ramps, elevators, automatic doors, etc.
“I have such a different perspective on what's important in life. And going through what I went through has definitely made me stronger,” he tells PEOPLE. “It feels amazing and a big part of why I'm telling my story and have this company is to help people and help the world.”
“I want people to not give up in recovery when they hear they have terminal disease,” Haendel says. “That's a lot of what I want to do with my life now is just help and motivate people.”
Vanessa Etienne
https://people.com/man-declared-brain-dead-talks-locked-in-syndrome-recovery-exclusive-8740104
Mike Dils’ slurred words and weakness that led his wife, Cheryl, to take him to the urgent care clinic on Feb. 4, 2012, gave them no hint of what was to come.
In the waiting room he passed out. After EMTs revived him, he flatlined at the hospital. Within hours the vibrant realtor, then 64, was unable to move, breathe or speak on his own. He became the paralyzed victim of a stroke. In the days that followed, Cheryl says she struggled with whether to sign a do-not-resuscitate order: “The doctors told me there was zero hope,” she tells PEOPLE.
Mike heard it all, including his family wrestling over what to do with him. “You can’t imagine how desperate that is, being 100 percent of sound mind and not being able to convey that—while outside, people are telling you you’re a goner,” he says. “I was a prisoner in my own body.”
Then, after a doctor confirmed the dire diagnosis, Mike’s daughter Cheyenne, then 20, noticed tears in her father’s eyes.
“Can you understand us?” Cheyenne suddenly asked Mike. Abruptly she proposed going through the alphabet letter by letter, telling her dad to blink on the letters he needed to get his message out. In the breathless minutes that followed, he spelled out “NO HOPE.”
Watch People Features: Mike Dils – I Was A Prisoner Inside My Body, available now, on PeopleTV. Go to PeopleTV.com, or download the PeopleTV app on your favorite mobile or connected TV device.
That turned the startled family around. “There’s always hope,” Cheyenne told him. “If you want to get through this, we’ll help you.
Mike and his medical team now believe the stroke had caused locked-in syndrome, a rare condition where damage to the brain stem prevents it from being able to direct the body’s movements. “The reason [the diagnosis] is missed is because patients look for all the world like they’re in a coma,” says Dr. Karen Hirsch, a neurocritical care specialist. “If no one tests their vertical eye movement and responsiveness to commands, there aren’t a lot of other ways to know that they’re conscious.”
Five years later—following months of painstakingly blinking out messages, intensive physical therapy and Mike’s own determination to retrain his brain to communicate with his body— he has regained his ability to talk, walk and even drive on his own.
“When you hear about recovery, what it usually means is that the person was able to take the surviving circuits and squeeze some new behaviors out of them,” says Dr. Steve Cramer, a University of California-Irvine neurologist, who attributes Mike’s rebound to the brain’s innate ability to find work-arounds—and also to Mike’s optimism, strong social support and Type-A drive. (At one point, Mike had Cheryl buy him hundreds of tennis balls that he tossed for hours on end into a trash can, to improve his hand-eye coordination.) “He was able to cross a goal line few others have,” Cramer says.
Adds Cheryl, 50, a hairdresser: “It’s just amazing, that’s all I can say.”
Mike, 70, who returned home six months after his stroke and now moves easily with a walker, works out daily on exercise equipment and spends hours in his garage wood shop, looks ahead to the day he believes he will walk unassisted. He holds no animosity for doctors who told his family he was unlikely to recover.
“I know in their own minds they thought I couldn’t feel anything, that I was frozen in time and that’s the way I was going to die,” he says. He wants to encourage others “not to throw in the towel.”
“He has an incredible message to share,” says Cheryl. “He’s certainly made an incredible difference in my life.”
Jeff Truesdell
https://people.com/human-interest/one-mans-recovery-locked-in-syndrome/
https://people.com/human-interest/one-mans-recovery-locked-in-syndrome/
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