Recovery after locked-in syndrome – A digital town square for and by Helvoir residents on Helvoirt.net

Advice for recovery and communication

BOSCH JEROEN HOSPITAL – August 9, 2024. Rehabilitation doctor Jan-Willem Meijer and intensivist Koen Simons from the Jeroen Bosch Hospital (JBZ) publish this week in the Dutch Journal of Medicinetogether with patients Geert Meijer and Maartje de Jong, recommendations for improving care for patients with locked-in syndrome (LIS).

This serious brain condition affects dozens of Dutch people every year.

Patients with LIS are fully conscious but completely paralysed, meaning they cannot move or speak. “Most patients can only move or blink their eyes. They are, as it were, trapped in their own body,” says rehabilitation doctor Jan-Willem Meijer. The cause is usually a blockage or bleeding in or near the brain stem, but it can also be trauma or a tumor.

Years ago, Geert (54) and Maartje (42) were locked in their own bodies after a brain tumor and could only communicate by blinking their eyes. Maartje says: “I was told I would have to wait three months to see if I could breathe or move independently again. As a neuroscientist, I knew how important it was to keep the brain active. From the moment I woke up from sedation, I began to exercise vigorously. After a week I could move my hips up and down smoothly. I also gained some control over my lips, which allowed my family to read my words. After three weeks in the ICU, I was transferred to a rehabilitation center. “

Often a bleak prognosis is given and therefore little attention is given to rehabilitation. However, it is important to start rehabilitation soon after complaints occur in order to achieve the best possible recovery. A small recovery for doctors, such as the movement of a finger, can add value to the patient’s already important function, for example by using assistive communication technology or environmental control and a wheelchair.

It is important that the rehabilitation process takes enough time for good communication with the patient. Rehabilitation doctor Meijer explains: “Most patients can only communicate with direct eye movements and/or blinking. Make agreements about blinking for yes or no, and use a letter card or speech computer. Tell the patient that the prognosis is uncertain, but most will have some recovery. Also mention that early recovery can improve recovery. This can encourage patients to keep trying to move or thinking about moving. In this way we may be able to help patients from ‘locked in’ to ‘unlocked’.”

Despite the grim situation, Geert and Maartje made a big recovery after months of rehabilitation. They urge health care providers not to look only at the bleak prognosis. Maartje: “There is a chance of recovery and starting rehabilitation early is essential. This can prevent a lot of boredom. “