Patient & Carepartner “Grab & Go” Emergency Documentation

The CurePSP Patient and Carepartner Advocacy Committee has created a document for organizing pertinent personal and medical history for patients and caregivers to have on hand should a medical emergency arise. By completing the document ahead of time and having copies available for the patient, family members, and caregivers, it is ready to “grab and go” in the event of any kind of emergency to offer medical personnel who may or may not be familiar with neurodegenerative diseases, such as progressive supranuclear palsy (PSP).

The Patient and Carepartner Grab & Go Emergency Documentation is a four-page, easy-to-use document for persons affected by all types of neurodegenerative diseases. It was designed to organize pertinent personal and symptomatic history for both the patient and the carepartner to have on hand in the event of a medical emergency, particularly if the medical professional is not familiar with the patient or the disease.

At the top of the document is an introductory paragraph that explains several named neurodegenerative diseases, lists possible symptoms, and mentions that people are often misdiagnosed as having other conditions.

In addition to listing general patient information, the document provides spaces for an emergency contact, a power of attorney, and caregiver details. The medical history section includes listing various neurological symptoms with places to note levels and types of function as well as psychosocial information. Of course, there also are spaces for providing current medications and known allergies.