Drew's Story
Life was rolling right along for Drew Bilek. The 28-year-old Wooster resident spent his days as a truck driver and traveling in his free time, especially to Europe. However, bothersome tingling and numbness in his legs sent him to the Emergency Department on two different occasions. Returning home with a diagnosis of anxiety, Drew thought it was under control until he was suddenly too weak to walk. Alarmed, Drew’s mother Jan rushed him to Cleveland Clinic Akron General. He would remain there for three weeks as paralysis crept over his body. Drew’s doctors determined he had Guillain-Barre syndrome (GBS)—a rare disorder where the body’s immune system mistakenly attacks the nerves causing weakness and paralysis. Drew could no longer move his arms and legs. The paralysis also affected the muscles that controlled his breathing and his doctors connected him to a ventilator to take over the work of his lungs. Doctors also placed a feeding tube directly into his stomach for nutrition.
Drew recalls that scary time, “I was paralyzed, confused and trapped on a ventilator, without the ability to breathe on my own or speak.” Drew’s doctors administered therapies—plasma exchange and IV infusion of antibodies—to manage the autoimmune attack. After three weeks, Drew stabilized and was ready to transition to the next step— a critical illness recovery hospital to focus on liberating from the breathing machine. For that, his doctors recommended Select Specialty Hospital – Akron.
Upon admission, Drew and his parents met with his physician-led multidisciplinary team including nursing and respiratory, speech, physical and occupational therapy. Under the guidance of a pulmonologist, respiratory therapy began breathing trials, gradually reducing the support of the breathing machine for short periods of time to allow his lungs to strengthen and take over the work. Drew’s speech therapist also attached a speaking valve to the hub of his tracheostomy. This one-way valve closes off after a patient inhales, forcing air over their vocal chords and giving them the ability to speak.
“Getting my voice back gave me back some independence and was a big motivator for me,” Drew shared.
There were other challenges along the way, however, and Drew had to return to Cleveland Clinic Akron General for a week of antibiotic treatment for lung inflammation. Due to seamless collaboration between the two hospital teams, the transfer to and from was smooth with Drew’s Select Specialty Hospital clinical liaison keeping him and his family informed and encouraged at every turn. After returning to Select Specialty Hospital, Drew kept strengthening his lungs during respiratory therapy sessions and spending longer amounts of time off the ventilator. Meantime, Drew’s physical and occupational therapists stretched his arms and legs in bed in preparation for the return of sensation in his muscles.
“After two months of not feeling anything, I felt a twitch in my arm and I knew progress was happening,” Drew said.
After 10 weeks at Select Specialty Hospital, Drew’s lungs had strengthened considerably and he achieved the milestone of successfully freeing from the machine. With that gain and the return of feeling in his arms and legs, Drew was ready for the next step in his recovery, an inpatient rehabilitation to keep getting stronger. For that, he and his family chose Cleveland Clinic Rehabilitation Hospital, Edwin Shaw.
Drew admitted he was nervous upon arriving in rehab. “I was in a lot of pain. I was worried that I wasn’t going to be able to tolerate much,” he recalled. He had two main goals in mind – being able to walk and hold his phone – both of which he needed to be able to do in order to return to work. Drew’s physician-led care team of nurses, physical therapists and occupational therapists devised a care plan to help him make as much progress as possible.
Drew’s long hospital stay coupled with his time on the ventilator resulted in significant muscle mass loss, rendering him very weak. Initially, Drew needed maximum assistance to move in bed, including a mechanical lift. When Drew progressed to being able to get out of bed, he was limited to a power wheelchair with an adaptive joystick due to significant weakness and fine motor challenges to both of his upper arms. Initially, he could not tolerate much time in a wheelchair because of the nerve pain and sensitivity caused by GBS. Drew also required assistance to bathe, dress, eat and brush his teeth due to his inability to raise his shoulders, grip anything with his fingers or actively extend both wrists.
Physical therapists worked to get Drew moving. Initially, they employed a device with sit-to-stand technology that is safe and comfortable for individuals with neurological disorders. With features similar to an elliptical exercise machine, this device features handles that are connected to both foot platforms, enabling users to develop their upper-body strength while simultaneously moving their legs to simulate a striding motion.
Once Drew was able to move more comfortably, therapists utilized an exoskeleton, a wearable robotic device that helps a patient stand and move their legs. It is used to both help a patient regain their ability to walk independently or resume normal walking patterns. “It was like it ‘woke up’ my legs,” Drew recalled.
Gradually, Drew became more comfortable and was able to progress to using a walker, which opened up new opportunities of movement. Physical therapists helped Drew work on improving his balance, coordination, reaction time and strength using BlazePods, a smart light-based reflex training system that brings an element of competition to his therapy sessions.
In occupational therapy, Drew and his team used a Barihab Mat Table to work on his sitting balance – and eventually his standing balance – in a safe and supported manner. With rails positioned on both sides of the adjustable table as well as back and knee support, this piece of equipment assisted Drew in the transition from the mechanical lift to sliding board transfers while standing and walking.
Therapists also used the Bioness Integrated Therapy System (BITS), a 55-inch interactive screen with a variety of apps and games used in a variety of ways to support recovery. For Drew, the BITS helped improve range of motion in his arms, standing position, finger coordination to touch and draw on the screen and endurance required to complete each program. Initially, the BITS was used in combination with the Barihab mat table to offer extra support, but Drew was able to progress to using the BITS standing with a walker. Drew enjoyed the BITS as a fun way to achieve milestones in his ability to stand for longer periods of time and improve the use of his arms. Those milestones, Drew recalled, made him feel “like I might just be able to walk out of here.”
To help Drew become more independent in his personal care, occupational therapists introduced a special type of shower chair with adjustable positioning features to allow someone to shower safely without the risk of falling. This was another big milestone for Drew in that he was able to shower in a tilted back and reclined position. As the weeks passed and Drew’s strength and balance improved, he was eventually able to transition to a regular shower chair.
During his 40 days at Cleveland Clinic Rehabilitation Hospital, Edwin Shaw, Drew made incredible strides. He was able to walk over 250 feet with a walker and bilateral ankle foot orthoses, which are braces designed to support and stabilize the ankle and foot. Drew was also able to complete 12 steps using a handrail -- both with only standby assistance. He also met his goal of being able to grasp his phone and complete activities of daily living with supervision only. Drew plans to build upon his progress with outpatient therapy.
Drew admits he has been changed by his illness and extended hospitalizations. He credits his therapy team and family for helping him to remain positive and motivated, even on challenging days. For others going through rehabilitation, Drew offers this advice: “Trust the process. I knew early on it was a marathon, but with the pain and how dependent I was on everyone, it was hard to see the big picture. Who knew that three hours of rehab a day would be harder than a full day’s work? But my team kept pushing me. They knew I could do it.”