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Marianjoy Gives Voice to Locked-In Author

Watch José walking during his therapy session.

When 33-year old José Rodriquez awoke with a bad headache and numbness on his left side, he immediately knew something was wrong. He drove himself to the hospital, where he experienced seizures and was put on life support, as specialists raced to determine the cause. A science fiction/fantasy author in his free time, one of José’s most prized assets is his active imagination. However, he never envisioned what would prove to be his own greatest trial: a brain-stem stroke resulting in cerebromedullospinal disconnection, more commonly known as “Locked-In Syndrome.” This rare but severe neurological disorder can occur following trauma to the head and brain. Patients who experience disorders of this nature most often include those with Amyotrophic Lateral Sclerosis (ALS), a traumatic brain injury, or—as in José’s case—a stroke. Typically, the result is complete loss of voluntary muscle control, including movement and speech, except for eye blinks or upward eye movements. Following a stay in the intensive care unit of an acute care hospital, José was sent for inpatient rehabilitation at Marianjoy.

In the past, there was little chance for recovery from this level of trauma. However, today, the innovative therapeutic approaches Marianjoy physicians and therapists have learned and developed help to unlock patients like José, offering him a greater chance for a meaningful recovery. One development in particular that José is grateful for is his ability to communicate. “Before coming to Marianjoy, I didn’t know if I’d ever have the chance to express my words again—and for a writer, that’s devastating,” he said. Fortunately, speech-language therapist Stephanie Bay recognized José could use Tobii® Eye-Gaze technology to communicate with his eyes. José accesses an Excel® menu using the Tobii® Eye-Gaze circular cursor, which replaces a standard mouse. The circular cursor tracks the movement of José’s eyes, allowing him to edit. Since beginning his therapy, and with the help of other physical and occupational therapists, José has progressed to supporting his communication efforts with a keyboard and mouse. Now, he is also beginning to vocalize single-syllable words—and with all of these developments, he has a lot to say. “The Tobii® technology has been fantastic for José,” says his father. “He can use it to send text messages, emails, and calls, along with interacting on Facebook. It’s really helped him to stay socially connected.” He’s even using the Tobii® to write his memoir. “I have drawn a lot from my experience,” says José. “Right now, I’m trying to put it on paper. I write because once I start, I have to finish.”

Beyond regaining his ability to communicate, José has also benefitted from therapy with technology for movement. “We’ve been using functional neuromuscular electrical stimulation (ESTIM or NMES) to assist with re-educating José’s atrophied muscles, especially in his lower extremities,” says Marianjoy Physical Therapist Kelly Ball. When he arrived at Marianjoy, José had difficulty sitting up. Working with his physician and therapist, he set a goal to regain his ability to walk. Now, thanks to his hard work, he walks nearly 30 feet every day—with the capability of up to 70. “He has truly surpassed any expectations and goals that we’ve set with him,” says Ball, “but from the moment I first met him, I was confident he would succeed. He has always been motivated and inquisitive about his condition and his therapy goals. José has progressed past my wildest dreams—and I know he will continue to improve.”

José continues to receive physical, occupational, and speech therapies. “My goal now is to be as close as possible to how I was before my stroke,” he says. “The technology at Marianjoy has helped me to regain a lot of movement from my head down to my right side. An electronic stimulator is giving me some movement on my left side, and I am able to operate my wheelchair, as well as feed myself, with my right hand.” Like a real-life hero in the science-fiction stories he writes, José has overcome adversity by accessing the latest technological and treatment breakthroughs in the science of rehabilitation at Marianjoy.