Mary's story

Mary Apicella couldn’t raise her legs.

Just weeks earlier, she never would have imagined such a thing. In the past year, she had traveled to Mexico, Jamaica, Arizona and Massachusetts. She loved yardwork, walking outdoors and regular workouts at her gym.  

Just over the horizon was a trip to the Dominican Republic. She’d lived there for nine years. She and her husband, Mark, had honeymooned there and came home in love with the country. They wound up moving there, Mark, landing a gig with a tour company and she ran her own catering business.  The plan was to go back with the two kids they’d had in tow.

But now, getting out of bed seemed like an impossibility.

Her troubles started with growing numbness that struck one morning -- a feeling of pins and needles in her fingers and toes. At first, she brushed it off. Then the numbness spread up her arms and legs. She told Mark that something was wrong. It lasted two days. Soon, she couldn’t walk. Her son and Mark carried her downstairs. “I told them to just call an ambulance,” she said.

At Mercy Hospital in Canton, doctors suspected a stroke. Tests told a different story. A spinal tap confirmed Guillain-Barre syndrome, a rare disorder where the immune system attacks the nerves. It affects about one in 100,000 people each year. Most patients recover, but that can take months or even a year.

Her condition worsened quickly. Soon she was struggling to breathe. “I remember them asking me, ‘Would you go on a ventilator?’ and I asked if that was my only option. They said, ‘That’s pretty much it.’”

Mary went on a ventilator. She received intravenous immunoglobulin therapy, or IVIG, which helps calm the immune system and stop it from attacking the nerves. Doctors placed a tracheostomy -- a small opening in her neck to help her breathe -- and a feeding tube.

It was hard to stay positive. As Mary’s hospitalization wore on, the family reminded themselves most patients recover. “A marathon,” Mary said, “not a sprint.”

She spent weeks in an acute care hospital before she transferred to Select Specialty Hospital – Akron.

Moving again

Therapists at the critical illness inpatient rehabilitation hospital focused on helping Mary get ready to return to her old life.

When she first arrived, Mary was immobile but her physical therapist discovered she could move both arms. Immediately therapists gave Mary several a range-of-motion exercises. Within two days, she was hefting weight cuffs strapped to her wrists.

They laid Mary on a table that tilted her to a standing position, and her physical therapist discovered that she could tolerate the position well. Slowly, her legs could support more of her body weight, and she could stand with the help of two people, who could transfer her to a wheelchair.

Mary’s occupational therapist began to guide her arm exercises, having her move her arms in patterns that mimicked movements she needed for basic self-care, like feeding herself.

Early in her stay at the hospital in Akron, Mary could speak through a special valve while still on the vent. Now her speech therapist worked with her on eating and swallowing. They conducted a Fiberoptic Endoscopic Evaluation of Swallowing study, where a doctor inserted a camera into her nose that threaded down her esophagus to determine whether her swallowing muscles intact. They determined she could swallow small bites. Mary practiced, and after weeks, she was able to return to eating soft foods.

By the end of her stay, Mary could stand with help, climb into a wheelchair and speak through her ventilator. 

Staggering progress from where she’d been, but Mary wasn’t where she wanted to be.

“I knew I needed some hard rehab,” she said.

And for that, she chose Cleveland Clinic Rehabilitation Hospital, Edwin Shaw. After weighing her options, she simply determined the physician-led team of therapists there were the ones to help her.

“It is the best,” she said

Hard rehab

 When Mary arrived at Cleveland Clinic Rehabilitation Hospital, Edwin Shaw, she had one goal: “To walk out of here.”

She faced major challenges. “I could not raise my legs. I couldn’t sit up on my own. I could barely raise my arms. No fine motor skills. I had numbness on the left side of my face.”

Her care team built a plan that included physical, occupational, speech and respiratory therapy. Each therapy focused on helping Mary regain strength, independence and confidence.

Mary started with the basics -- sitting balance and transfers. She practiced “sit-to-stands,” moving from sitting to standing with support. Therapists used a robotic exoskeleton -- a device uses robotic legs to compensate for muscle loss -- and a specialized walker to help her how to get along on her feet.

She also used a functional electrical stimulation bike, or FES bike. This device sends small electrical pulses to her muscles, making them contract. For patients like Mary, whose nerves were damaged by Guillain-Barré, those impulses help keep muscles active and prevent atrophy while the nerves heal. Over time, this stimulation helps rebuild strength and coordination.

Car transfer training was another milestone. She practiced on a device designed to look like a car. “I can pretty much transfer myself now,” Mary said. By discharge, Mary could walk with a walker and assistance — a huge step toward independence.

Occupational therapy focused on everyday tasks. At first, Mary lacked the fine motor skills to hold her phone. Therapists used an arm bike and FES stimulation for her upper body. She practiced grooming and bathing, starting with assisted showers. By the end of her stay, she could shower and wash her hair on her own.

Speech therapy helped Mary regain her voice and build on her swallowing abilities.

Early on, she worked on puckering her lips and blowing through a pinwheel sent by her niece, who happened to be a speech pathologist. The activity helped build the exact muscles in her throat and mouth she’d need for swallowing and speaking.

“When my sister and kids heard my voice for the first time after the ventilator came out, they started crying,” Mary said.

Respiratory therapy supported her breathing as she weaned off the ventilator and tracheostomy.

A new perspective

“I have gotten frustrated trying to walk and it gets overwhelming,” Mary admitted. But encouragement from her therapists — and constant support from Mark — kept her going. “My husband has been here all the time. He gets more emotional than me. When he saw me walk with a walker for the first time, he got all teary-eyed.”

Family and friends rallied around Mary. They sent cards, visited often and posted hundreds of messages on Facebook. “Mark would sit here and read them all to me,” she said. Friends cooked meals for Mark, and her niece sent a care package with tools to help Mary practice speech and breathing.

Mary’s progress was remarkable. She went from being unable to move or care for herself to walking with a walker, showering independently and managing daily tasks. “I feel fantastic, like I am almost ready to go home,” she said before discharge.

After seven weeks at Cleveland Clinic Rehabilitation Hospital, Edwin Shaw, Mary could stand from a sitting position, shower on her own and perform the goal she set out to achieve when she first arrived. She could walk. She used a walker and she needed help, but she was putting one foot in front of the other again.

She looked forward to simple joys: sitting outside in the sun, attending her daughter’s pharmacy school award ceremony and traveling again. “We’re hoping to go to Cape Cod this year,” she said. 

And that long-awaited Dominican Republic trip? Still on the list.

Like the trip abroad all those years ago, rehabilitation has changed Mary’s perspective. “I think I have more empathy for people because you don’t realize all that they go through,” she said. “And I appreciate everything a whole lot more.”