**This is part 4 of 4 of Lucia Mack’s story.**

For nearly three years, Lucia Mack has successfully managed her narcolepsy and cataplexy with several medications. It’s been a collaborative process, with John Carter, MD, providing information on all the available options.

“What MetroHealth offers that’s unique and important is an individually tailored diagnosis and treatment plan for any sleep condition,” Dr. Carter says.

Lucia sees Dr. Carter every three months to talk about any symptoms she’s having and to tweak her medications as needed. Through a bit of trial and error, they’ve landed on a stimulant that promotes wakefulness; an antidepressant that helps manage the cataplexy; and an off-label drug (originally approved for use by the Food and Drug Administration as a muscle relaxant) that has shown benefit in providing a better quality of sleep.

“I don’t feel like I need to sleep all the time,” says Lucia, now 16. “Everything before the diagnosis is a fog … it feels like it was a long time ago.”

Lucia’s sophomore year at North Olmsted High School was packed with activities: soccer, Mock Trial, a member of the ensemble in the school musical. She finished the year ranked 12th out of more than 260 students in her class. Even though her diagnosis allows for accommodations such as extra time to turn in assignments or naps in the school nurse’s office, Lucia says she didn’t always need them.

Two days into her summer vacation, Lucia passed the road test for her driver’s license test – something that would never have been possible without treatment. It makes getting to and from daily soccer practices and a part-time job at Chipotle much easier.

“Dr. Carter is a godsend. We are incredibly lucky that we have him as Lucia’s sleep doctor,” Marilyn says. “Our girl’s back! We can see her personality again. She’s thriving!”

#storiesofhope #hopehealthandhumanity #WorldNarcolepsyDay

**This is part 3 of 4 of Lucia Mack’s story.**

Lucia and Marilyn Mack were immediately impressed with the attentiveness and patience of Dr. John Carter, part of MetroHealth’s Sleep Medicine team.

Based on Lucia’s medical history and his observations, Dr. Carter recommended an overnight sleep lab test, and a full day of additional testing.

A few weeks after her appointment, Lucia started the 7th grade. She joined the school’s cross-country team and a club soccer team. She constantly struggled to get ready for practice, sleeping until right before it was time to leave the house and sometimes sleeping in the car.

Every day after school, Lucia slept on the couch until it was time for dinner, then would go back to sleep.

Her parents tried to make sure Lucia’s wake and bedtimes were consistent and that she continued eating a balanced diet.

They also held out faint hope that this was a condition she would grow out of. But she didn’t.

Accompanied by Marilyn, who was required to stay with her the entire time, Lucia checked into her sleep study at MetroHealth’s Main Campus in September 2019.

She had just begun the 8th grade.

With electrodes pasted on her scalp, Lucia went to sleep at 10:30 p.m. Overnight, an EEG monitored her brain activity, specifically when she went into REM (rapid eye movement) and non-REM sleep, and other measurements such as heart and breathing rates.

Lucia was awakened at 5:15 a.m. for the sleep latency test.

That test measures how quickly someone falls asleep and how often they slip into REM sleep, the sleep stage where the brain is more active and when heart rate and blood pressure levels are close to a person’s awake levels.

As part of the test, she took five scheduled naps and had to stay awake for two hours – without any caffeine – in between each nap.

Dr. Carter called Marilyn with the results, a “slam dunk” that supported a formal diagnosis of narcolepsy and cataplexy, he told her.

Many effective treatments exist for the chronic illnesses, but no cures.

The next step: figure out how Lucia could manage them for the rest of her life.

**Follow us tomorrow for more of Lucia’s journey.**

#storiesofhope #hopehealthandhumanity

**This is part 2 of 4 of Lucia Mack’s story.**

Marilyn Mack took her daughter Lucia, then 12, in for her annual checkup with MetroHealth pediatrician Susan Santos, MD, in May 2018. The two mentioned Lucia’s new symptoms.

“It’s unusual for a girl her age to want to take naps,” says Dr. Santos, “and fall asleep while talking to her friends.” Sleep apnea, and not narcolepsy, would be less surprising for someone Lucia’s age.

But the fact that Lucia specifically suggested #narcolepsy and #cataplexy to Dr. Santos – and had nearly fallen asleep on the exam table during her appointment – prompted the pediatrician to put in a referral for a sleep study, a polysomnogram.

If Lucia was indeed found to have narcolepsy, it would be only Dr. Santos’s second patient diagnosed with the disorder in her 23-year career.

In August 2018 Lucia Mack met John Carter, MD, for the first time. He is a neurologist and sleep medicine physician.

MetroHealth’s Center for Sleep Medicine is part of Cleveland’s long history of being at the forefront of the discipline.

“We see patients from across Ohio and other states,” says Dr. Carter, who joined MetroHealth in 2017 after completing his medical training in Seattle in large part because of the health system’s multidisciplinary approach and mission to make such specialized health care accessible.

Although Dr. Carter says it’s common for the onset of narcolepsy to happen in children Lucia’s age or in early adulthood, the average delay from when someone first notices symptoms to getting diagnosed is close to 10 years.

When a young person’s sleep is all over the place, as it was with Lucia, a diagnosis can be challenging, Dr. Carter says.

“Narcolepsy is frequently misdiagnosed as depression, sleep apnea, or insomnia,” he says. And if someone isn’t fortunate to get medical attention, they may simply be written off as “lazy.”

But Lucia had several things going for her. Her mother is a nurse and knows how to navigate the medical terrain. And her pediatrician knew enough about narcolepsy and cataplexy to suggest a sleep study.

**Follow us tomorrow for more of Lucia’s journey.**

#storiesofhope #hopehealthandhumanity #narcolepsy

**This is part 1 of 4 of Lucia Mack’s story.**

Lucia Mack was 12 years old and finishing up the 6th grade in spring 2018 when she started falling asleep during the day. Summer vacation was a welcome break, allowing her more time to sleep. But when the new school year began in the fall, her symptoms gradually became more obvious. Sleeping in the middle of the day. At school. While video chatting with friends.

The sleep episodes at school were short; someone would wake her up. Her closest friends weren’t that shocked or worried. They chalked it up to Lucia being Lucia – it was just a part of who she was. Most everyone else seemed not to notice. Always a good student, Lucia continued to manage straight A’s even though she slept through big chunks of classes. As she got older, she started sleeping a lot more during class.

“I knew I was sleeping fine at night, so I was wondering, ‘Why am I so tired?’”

Lucia also wanted to know why she would sometimes “fall over” if she was laughing really hard with her friends.

“That’s not a thing,” she says. “I was like, ‘I think I might have narcolepsy or something.’ ”

Lucia didn’t initially share her concerns with her parents. She had heard of the chronic sleep disorder that causes people to suddenly fall asleep without warning but didn’t really know what it was.

So, she turned to the internet for answers, and quickly realized that her symptoms – including being extremely sleepy during the day – were consistent with narcolepsy and cataplexy, a condition in which a strong emotional response (laughter, stress, excitement, etc.) brings on a sudden muscle paralysis.

Meanwhile, Lucia’s parents had begun noticing a difference in their daughter.

“She didn’t dance around the house anymore or sing like she used to,” says Lucia’s mother, Marilyn Mack. “She used to do cartwheels, she was always bouncing around … and she just kind of stopped.”

Lucia was more irritable. And she was falling asleep multiple times during the day.

“We didn’t know if it was just adolescence or something else,” Marilyn says.

**Follow us tomorrow for more of Lucia’s journey.**

#storiesofhope #hopehealthandhumanity #sleepdisorders #narcolepsy

**This is part 4 of 4 of Jeffery Buysse’s story.**

More than a year has passed since Jeff Buysse participated in the research study designed to find ways to improve hand function. Since then, he’s worked out regularly with two personal trainers at a gym near his home in Cleveland’s Tremont neighborhood. He’s been riding his bicycle again and started using a Bioness device on his leg. The device’s electrical stimulation allows him to walk with a smoother gait.

Jeff hasn’t yet reached his goal of being able to drive again, but Dr. Victoria Whitehair, a Physical Medicine and Rehabilitation physician who sees Jeff for regular follow-up appointments, says she has no doubt that he will do it eventually.

“Over time, I’ve gotten to see just how capable he is of exceeding expectations,” says Dr. Whitehair, now Director of Brain Injury Rehabilitation at the MetroHealth Rehabilitation Institute. The institute was recently named #1 in Ohio and #24 in the nation by U.S. News & World Report.

Jeff and his husband Cary Schneider took a 10-day cruise to Central America in January 2022, including stops in Costa Rica, Honduras, Panama, and Cartagena, Colombia. In April, they attended a friend’s wedding in Chicago. Now that he’s back in travel mode, Jeff has started a new list of destinations: the Philippines, Indonesia and Africa are on there.

In July, neighbors and friends gathered to celebrate Jeff’s 56th birthday at a party hosted by Cary at their home. Says Cary, “A great time was had by all!”

#storiesofhope #fabrehab #hopehealthandhumanity

**This is part 3 of 4 of Jeffery Buysse’s story.**

Before Jeff Buysse left MetroHealth, researchers monitored his condition to see if he might benefit from a study designed to find ways to improve hand function. Jeff agreed to the study, which explored the use of contralaterally controlled functional electrical stimulation (CCFES).

Co-invented by Jayme Knutson, PhD, a neurorehabilitation research scientist at MetroHealth, the patented neuromuscular electrical stimulation therapy is for people with paralysis on one side of the body caused by a stroke. While wearing a special glove on the unaffected hand, the study participant controls a stimulator that activates muscles in the affected hand.

Dr. Knutson joined MetroHealth in 2011 as a researcher. Since 2013 he has served as Director of Research in the Department of Physical Medicine and Rehabilitation.

“PM&R at MetroHealth believed in research as a crucial way of innovating new treatments for the patients they’re serving.”

In late 2019, Jeff enrolled in the 12-week study, which compares the effectiveness of CCFES with another method of electrical stimulation and no stimulation. He was in the treatment group that didn’t receive stimulation. Instead, he worked on task-oriented exercises for 90 minutes twice a week.

In January 2021 Jeff enrolled in a second 12-week CCFES study led by Dr. Knutson. It was held at the Louis Stokes Cleveland Veterans Affairs Medical Center, where Dr. Knutson is a research biomedical engineer. In that study, all participants received the CCFES therapy.

At home, while controlling the stimulator to activate muscles in his right hand, Jeff played custom-made hand therapy video games for 10 hours a week. The video games were developed by Dr. Knutson’s colleague at MetroHealth, Michael Fu, PhD.

“Jeff was a star. He worked incredibly hard,” says research occupational therapist Terri Hisel, who worked with Jeff. “He put so much effort into our sessions that he was able to master the added systems that supported his movement practice.”

*Follow tomorrow for more of Jeffery's story**

#storiesofhope #fabrehab #hopehealthandhumanity