In 1982, I completed my training as a general nurse, after which I worked for a long time in the neurosurgery department. I pursued further training as a nursing instructor and worked for several years outside Erasmus MC as a nursing lecturer starting in 1987. In 1990, I returned to Erasmus MC full-time, initially working in the inpatient ward and, from 2005 onwards, as a nurse consultant at the neurology outpatient clinic. In 2007, I completed my higher professional education in theology and, alongside my role as a consultant, also became a spiritual caregiver. Currently, I work two days a week at the neurology outpatient clinic and three days at the end-of-life clinic, as well as serving as a pastor in liberal churches. My expertise mainly lies in palliative care.

At the neurology outpatient clinic, I coordinate care for a large group of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Spinal Muscular Atrophy (PSMA), with additional expertise in Myotonic Dystrophy and Myasthenia Gravis. Throughout my guidance, I “walk alongside” patients with chronic illnesses, discussing treatment options and advising on the organization of care and assistive devices. When necessary, I refer patients to the rehabilitation center and/or the home ventilation center.

During outpatient consultations, I take ample time for patients. I provide education about muscle diseases, offer guidance, and advise on ventilation, PEG/PRG placement, end-of-life boundaries, and related questions.

I also find it important to support patients’ partners and children, as they often take on a heavy caregiving role. I coordinate with the home ventilation center, the gastroenterology department, rehabilitation specialists, and general practitioners.

In recent years, training home care staff on palliative care topics and the complex care needs of ALS patients has become my passion. Additionally, I give lectures on palliative care and end-of-life guidance.

Together with members of the ALS task force at Spierziekten Nederland, I organize and lead patient and caregiver meetings annually.

Finally, I consider it a meaningful role to educate and inspire neurology residents about anterior horn diseases such as ALS, supporting and training them in delivering difficult news conversations.