Each year, UAB Spain Rehabilitation Center (SRC) selects a patient for the Ambassador of Hope Award. This special honor goes to a disabled individual whose courage and determination inspire hope in others facing the challenges of disability. Jay Fassbender is the 2021 recipient of the award. His story concerns his struggle with the rapid onset of a rare muscular condition.
A Daphne, Ala., resident until recently, Fassbender is a paramedic and former firefighter. In December 2020, he began having cramps and weakness in his hands, which soon progressed to loss of function and then weakness in his arms and legs.
“This all happened over the course of about 10 days,” Fassbender says. “My wife is a nurse practitioner, so naturally she and I knew we needed to seek treatment, but I didn’t get a diagnosis over the holidays. On New Year’s Day, I began to lose my ability to walk. By the time I made it to a January 6 appointment, I was in a wheelchair. The first diagnosis was Gullain-Barré syndrome.”
Gullain-Barré syndrome (GBS) is an inflammatory disorder of the nerves outside the brain and spinal cord. It causes a rapid onset of numbness, weakness, and often paralysis. GBS can be debilitating in some cases, so Fassbender was relieved when he quickly began to recover and was able to return to work in mid-January. Unfortunately, that sense of relief would not last.
“My illness was like a rollercoaster,” Fassbender says. “I would improve over the course of a week and then deteriorate. Each time, the weakness and loss of function would get more serious. My care team in Mobile suspected that GBS was not the cause. After a fifth go-round with improvement and regression, I was transferred to UAB Hospital in April.”
Before his transfer to UAB Hospital, Fassbender was diagnosed with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), an autoimmune disorder related to GBS that causes nerve damage. Fassbender would learn that CIDP was not the cause of his loss of function either.
A Successful Experiment
At UAB Medicine, Fassbender was under the care of Rocio Vazquez Do Campo, MD, an assistant professor in the Department of Neurology. Through a series of tests, Dr. Vazquez Do Campo determined that Fassbender had multifocal motor neuropathy (MMN), a rare and difficult-to-diagnose condition that causes damage to nerves in the arms and legs. It typically begins in adulthood and slowly gets worse over time. MMN is thought to be due to an abnormal immune response, but the underlying cause is not clear. In Fassbender’s case, resolving the condition would require a highly specialized treatment plan that called for infusions of intravenous immunoglobulins (IVIG).
“Mr. Fassbender had previously received corticosteroids and plasma exchange, followed by a decline and then a worsening in his condition,” Dr. Vazquez Do Campo says. “He did experience improvement with infusions at the beginning, but at some point IVIG stopped working, and Mr. Fassbender continued to decline and became totally paralyzed in both arms and legs. We decided to treat him with a novel, somewhat experimental drug called eculizumab, or Soliris. It has not been approved for MMN, but some studies suggest that it could be effective for MMN and other autoimmune conditions. Because of the rapid decline in his condition, and having no other good alternatives, we decided to start Mr. Fassbender on eculizumab. After introducing that medication, we saw tremendous improvement, and he regained the ability to walk and become independent. We plan to continue the medication for at least another year.”
Fassbender says the successful experiment changed his life.
“Dr. Vazquez Do Campo’s decision to try that novel medication is what turned this around for me,” he says. “When we began, I was motionless except for breathing and talking. She and the care team she was leading basically decided to start from scratch to get the correct diagnosis and treatment plan in place. She saved my life. From that point, it was a matter of the drug regimen and physical therapy at Spain.”
Turning a Corner
Fassbender was an inpatient at UAB Spain Rehabilitation Center (SRC) for 90 days. His weekly infusions and three hours of physical therapy with the care team began to reverse his paralysis.
“To be honest, at some point in a situation as severe as mine, you start having doubts about your future,” he says. “But as weeks went by, I had no more declines in the condition. I started counting the days. We got past that magic mark of x-amount of days, and I knew we had turned a corner. The one-step-forward, two-steps-backward routine was over. It was the happiest day of my life.”
Physical therapy was intended to be an essential part of Fassbender’s one step forward. After almost six months of loss of limb function, his muscle tone and strength were greatly decreased. He would be required to push himself to the limit in order to regain strength, movement, and coordination. It was during that strenuous phase of treatment when Fassbender began to have an inspirational effect on both the care team and other patients.
“I believe in the power of positive thinking, so I try to share my positive energy,” he says. “I think we all have that obligation. If you see someone struggling, you offer love and support, even if — or maybe especially if — you are in a struggle yourself. I may not know when it’s going to be over, but I know I’m one day closer. My mantra while in the first weeks of therapy became, ‘Every day is one day closer.’ So when I was in the gym, almost motionless and straining to get just one arm to move, it made sense to me to encourage the other patients. I also know how much the staff at Spain care about all of us, and they want to see our progress and healing. So I was hoping to maybe lift their spirits as well.”
Living the Positive Spirit
According to many on Fassbender’s care team who assisted with his recovery, he didn’t need to worry about having a positive effect on those around him. Jessi Cowan, PT, DPT, says Fassbender was “an inspiration to everyone he came into contact with during his two stays at Spain Rehab.”
“Despite the odds stacked against him, Jay stayed positive and exemplified perseverance each day,” Cowan says. “He never turned down a challenge. He was unable to move from the neck down at the beginning of his second stay, but he always told me that he would walk out of Spain Rehab, and that is exactly what he did.”
Erin Brownlee, MHSOT, OTR/L, lead therapist for Spain Rehabilitation Center, says Fassbender stayed optimistic throughout his ordeal.
“Jay was a joy and privilege to work with,” Brownlee says. “He focused on his recovery the entire time and never dwelled too long on the relapses. Jay worked hard in every single session. He uplifted the patients and staff members he encountered. He was so generous, even when going through the biggest challenges he ever faced. It was an honor to work with him and play a small part in his recovery.”
Fassbender says he thinks of himself as a normal guy, except for a perhaps abnormal obsession with positive thinking.
“I have a motto: Live your spirit,” Fassbender says. “I think about this daily, and I did so each day while re-learning, in therapy, the most basic movements that we take for granted when we are healthy, and I was struggling to get those basics back. We have an obligation to be true to ourselves and live our best life, so that guided me through the process. Maybe I can’t promise results, but I can promise effort.”
Every Day a Miracle
Fassbender’s transfer to UAB Hospital led to many good results beyond his recovery.
“My wife, Christy, told me one day that we should move to Birmingham,” Fassbender says. “We had both pretty quickly learned that UAB Medicine is special. We packed up our house and got an apartment. There was an opening for a nurse practitioner with the UAB Cardiovascular Institute. Christy had a job interview the next morning. She was hired on the spot.”
Today, Fassbender says his return to a mostly normal life, which still requires physical therapy (PT) at Spain Rehab, is a kind of ongoing success.
“When the treatment that Dr. Vasqez Do Campo prescribed continued to work, I began believing that every day of my life is a miracle,” he says. “I’m walking now, but I do use a power chair for longer walks because I can’t stay on my feet for extended lengths of time. But I can drive myself to PT, walk in the door, do the routine, walk back to my car, and drive home. Compare that to six months ago when I was almost totally immobile. I have a disease that can’t be cured, but it can be managed, and thanks to the teams at UAB Medicine, I have it under control. Each day I can do something that I couldn’t do yesterday. That’s a miracle.”
Click here to learn more about UAB Spain Rehabilitation Center.