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Care and monitoring

Care and monitoring for Perry syndrome

There is currently no cure or proven disease-modifying treatment. Care focuses on symptoms, safety, function, comfort, and the priorities of the person and family.

Care priorities

Movement

A movement-disorders neurologist may consider dopaminergic therapy and physical, occupational, and speech therapy. Responses vary.

Breathing

Pulmonology and sleep specialists can monitor for nocturnal hypoventilation and discuss non-invasive or other ventilatory support when appropriate.

Mood and thinking

Depression and suicidal thinking require active screening and treatment. Psychiatry, psychology, counseling, and caregiver support may all help.

Nutrition and swallowing

Dietitians and speech-language pathologists can support calorie needs, swallowing safety, communication, and decisions about assisted nutrition.

Medication and ventilation safety

Important: Medication and ventilation decisions must be individualized. GeneReviews advises avoiding respiratory depressants such as alcohol, narcotics, and benzodiazepines unless a treating clinician has specifically assessed their use.

Urgent mental health support

If you or someone you know may act on suicidal thoughts, contact local emergency services or a crisis line now. In the U.S. and Canada, call or text 988.

Sources for this page

Sources checked August 20, 2026