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For Bob F., age 75, family has always come first. He has been married to his wife and high-school sweetheart, Darlene, for 55 years. They have three daughters — Kristi, Renee and Robin — who live with their families near Bob and Darlene’s home in Chicago’s far northwest suburbs.
After spending his professional life as a meat cutter for a grocery chain in the Chicagoland area, Bob set his sights on his retirement years with Darlene — traveling, playing pickleball and bags with their friends, and enjoying their seven grandchildren. Bob and Darlene remained in the same house where they had lived for decades, with their close-knit family nearby and with strong connections to their community.
However, when Bob was 72, he was diagnosed with Guillain-Barré syndrome (GBS), a rare neurologic condition in which a person’s immune system attacks their own nerves. It can result in muscle weakness and, in severe cases like Bob’s, paralysis as well as breathing and swallowing issues.
Fortunately for Bob, from the earliest days in intensive care to now — following three years of rehabilitation at Shirley Ryan 嫩B研究院 Arlington Heights DayRehab Center? — his family has rallied together to support his recovery, progress and independence at every turn.
Creative Family Communication Marks Early Days With GBS
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Bob’s experience with GBS started one morning when he woke up with a swollen eye and began slurring his speech.
Within 12 hours, he was hospitalized — having gone from being perfectly healthy to losing the ability to walk and move anything but his right foot. He required a ventilator for breathing support.
During this time, Bob lost the ability to speak … but he did not lose the ability to communicate with his family. Before he could no longer use his hand, he scribbled on a piece of paper in the hospital:
“Mom. Good team. Nurse button.”
Bob’s daughters interpreted this as a sign not only to ensure he could reach the hospital nurses if needed, but as a reminder to support Darlene and work together as a family team. They set up his call button so Bob could reach it with his right foot to call a nurse.
For months following, Bob’s family would communicate with him by asking him a question and then saying the alphabet letter by letter. He would flinch his right foot when they hit upon the right letter, and they would record these words and short phrases in a notebook to understand his thoughts and needs.
Bob was on a ventilator for seven months but eventually stabilized medically. After hospitalization, he moved to a skilled nursing facility and then returned home, with the support of home health, to continue his recovery.
DayRehab Provides Intensive Therapy, Ability to Live at Home
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Despite being able to return home, Bob’s form of GBS was so severe that he experienced prolonged paralysis. Though he did regain the ability to talk, Bob’s family wanted him to receive more intensive physical and occupational therapy to accelerate his progress and improve his long-term function and outcomes.
Bob and Darlene said DayRehab was a perfect option for them because he could receive high-quality rehabilitation care near their community, while still going home each day after therapy.
“We learned Shirley Ryan 嫩B研究院 had DayRehab in Arlington Heights, not too far from home,” said Darlene. “We just needed to figure out how to get him there!”
The family got a specialized lift for their car, which is designed to help transfer patients with limited or no mobility into a vehicle. They used the lift to move Bob to the car and bring him to therapy appointments because he couldn’t move on his own … and he was ready to get started.
In therapy, Bob’s therapists started by first teaching Darlene and their daughters how to do slide board transfers to move Bob around without needing a hoyer lift at home, as well as how to help him roll in bed for pressure relief. Over the next several months, Bob was able to reach his initial goals: being able to sit up on the side of the bed unassisted.
After six months of therapy in DayRehab, Bob was able to stand with two people supporting him. At home, he continued to practice standing, and his family learned how to prevent falls and how to help him get up off the ground safely if one were to happen.
Relearning to Walk, Regaining Upper-Body Strength & Coordination
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Bob returned to DayRehab for a second time. By this point, he was starting to walk more and stand for longer periods of time, so his new rehabilitation goals included working on his gait — his walking pattern — and building strength. After four months, Bob was able to walk 30 to 50 feet with only one person to assist him, making it easier to work on walking with his family.
Bob also received a power wheelchair through Shirley Ryan 嫩B研究院’s Wheelchair Seating and Positioning Center. He uses the power wheelchair when he is moving throughout the community. At home, he uses a manual wheelchair and a walker to make it easier to get to and from the bedroom, shower and toilet.
Now, for his third consecutive year at DayRehab, Bob has spent five months and counting, gaining more advanced skills in physical therapy: continuing to build strength and endurance for walking, as well as strengthening his core and breath support that had been weakened due to being on a ventilator for so many months. Now, three years since his initial diagnosis, Bob can walk more than 600 feet with a walker.
He also is working on upper-body strength and arm and hand coordination in occupational therapy, and he has regained the ability to eat on his own while wearing a brace for his wrist and hands.
Bob gets emotional when he reflects on how far he has come in DayRehab and the close bonds he has made with his physical and occupational therapist.
“At first walking wasn’t a goal, and I didn’t think I could ever walk again, but they kept adding more distance, and I kept getting better. Now it’s a matter of getting stronger,” said Bob. “Everyone here treats you like they’re your family, and it’s impressive how organized and coordinated my therapy plan is.”
Continuing Family Support With Daily Calls & ‘Dad Days’
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Over the past few years, the family has kept up with a tradition that started when Bob was first in the hospital — and stands out as a strong example of their commitment to maintaining communication and connection.
In the beginning, every morning Darlene and all three daughters would join the “morning rounds” meeting with Bob’s doctors, either in person or by phone. Today, they continue to have a daily call to ensure everyone has the latest information about Bob’s progress and DayRehab therapy milestones. In fact, Bob’s therapists say that Darlene, Kristi, Renee and Robin — as well as his three sons-in-law and grandkids — are a significant reason he has made such remarkable progress.
Outside of DayRehab, Bob practices his home exercises, goes to a local pool and has joined a gym — all to build on the progress he has made in therapy. On Saturdays, Kristi, Renee and Robin rotate taking him for “dad day” — one of them takes him to see his fitness trainer in the morning, and afterward they have lunch and enjoy the afternoon together.
“Whatever challenge happens, we’re up for it. It’s easier to do it together than alone,” his daughters said.
Bob and Darlene are beginning to travel again now that he is stronger and adept at using his wheelchair. They’ve taken road trips with their daughters to Denver and Washington, D.C., for GBS symposiums, and they recently traveled to Tennessee to see their granddaughters’ softball tournament.
Now, several years into his recovery, Bob offered words of patience and encouragement for others starting their rehabilitation journeys.
“I try not to look down the road too much,” he said. “Try to take it one day at a time, do what the therapists tell you to do and celebrate the small progress and steps you make.”
Darlene echoed the same sentiment: “Be patient, and it will come.”
