For most physicians, the boundary between provider and patient is a clear one. But four years ago, Dr. Rob Agostinis found that line erased in an instant. In a sudden and terrifying reversal of roles, the Edmonton-based physician went from treating others to fighting for his own survival against a condition so rare that, at the time of his diagnosis, he was only the 17th documented case in the world.
The diagnosis was anti-neurofascin syndrome, a rare autoimmune disease where the body’s own defense system turns against the nervous system. Specifically, antibodies attack the proteins at the junctions between nerves, effectively cutting off the electrical transmission required for muscle movement and respiration. For Dr. Agostinis, the result was a total systemic collapse.
“I was paralyzed from the jaw down and couldn’t breathe,” Dr. Agostinis explained. “My immune system went bad on me and decided to attack the junctions between my nerves. So all of a sudden, there were junctions, and there was no transmission. I was paralyzed.”
The experience was not merely a physical failure but a psychological trauma. He describes a state of profound isolation and fear, noting, “I couldn’t even feel my lower legs, and I was terrified.” This state, which he likens to a form of locked-in syndrome, left him trapped within his own body while medical teams scrambled to stabilize him.
The science of a systemic attack
From a clinical perspective, anti-neurofascin syndrome is a devastating neurological event. In a healthy nervous system, signals travel rapidly along axons, jumping between gaps called the nodes of Ranvier. When antibodies target neurofascin—a protein essential for maintaining these nodes—the “insulation” of the nerve fails. The result is a catastrophic drop in conduction velocity, leading to the rapid onset of paralysis and respiratory failure.
After months of intensive medical interventions and high-dose steroid treatments to dampen the immune response, Dr. Agostinis was transferred to the Glenrose Rehabilitation Hospital in Edmonton. While the medications stopped the attack, the work of reclaiming his life required a different kind of medicine: intensive physical rehabilitation.
The recovery process was grueling and marked by the side effects of the very drugs that saved him. “I was on steroids, which made me swollen,” he recalled. However, it was during his time at the Glenrose that he encountered the tool that would become the catalyst for his recovery: aqua therapy.
The life-saving role of aqua therapy
For patients recovering from paralysis, the transition from a bed to standing is often the most daunting hurdle. Aqua therapy utilizes the buoyancy of water to reduce the effects of gravity, allowing patients to move limbs and practice gait training without the full weight of their bodies pressing down on weakened joints and muscles.
For Dr. Agostinis, the pool was more than a facility; it was where he regained his autonomy. “It brought me confidence. It was that moment. They put the wheelchair right up to the rails. I got up, went down the rails and once I was in the water I was right. I was fantastic,” he said.
The physical transformation was visible. He notes that the water therapy helped resolve the systemic swelling caused by his medications, recalling that the reduction was so significant that his wedding band eventually fell off his finger.
A critical facility in jeopardy
Despite its proven impact on patient outcomes, the aqua therapy pool at the Glenrose is currently unusable. In November 2024, the facility was forced to close following a structural failure, leaving a void in the rehabilitation pipeline for hundreds of patients facing similar challenges to those Dr. Agostinis endured.
The Glenrose Hospital Foundation has launched a campaign to rebuild the pool, setting a fundraising goal of $6.5 million. As of late 2024, the foundation reports it is halfway to that target.
Dr. Agostinis is now using his own recovery story to advocate for the facility’s restoration. He believes that sharing the reality of his paralysis—and the subsequent hope found in rehabilitation—can motivate the community to close the funding gap.
“I wanna tell people what is it like to being the way I was paralyzed and basically locked in syndrome, but also wanna tell people that there’s hope and there’s possibilities and the possibility to actually progress,” he said.
Rehabilitation Milestones and Impact
| Phase | Primary Challenge | Rehab Intervention | Outcome |
|---|---|---|---|
| Acute Phase | Total Paralysis/Respiratory Failure | Intensive Medical Care/Steroids | Stabilization of immune system |
| Early Rehab | Muscle Atrophy/Severe Swelling | Passive Range of Motion | Prevention of joint contractures |
| Active Rehab | Weight-bearing Difficulty | Aqua Therapy | Regained confidence and mobility |
| Recovery | Functional Independence | Integrated Physical Therapy | Return to community/advocacy |
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Please consult a healthcare professional for diagnosis and treatment of autoimmune or neurological conditions.
The Glenrose Hospital Foundation continues to seek donations to reach the remaining balance of its $6.5 million goal, with the hope of reopening the aqua therapy pool to serve the next generation of patients. Updates on the rebuilding progress are provided through the foundation’s official donor portal.
Do you have a story of recovery or a suggestion for improving rehabilitation access in your community? Share your thoughts in the comments below.
