Information for Patients and Caregivers

It is not easy to find medically accurate, up-to-date information about the periodic paralyses. This site contains two types of information; 1) that which is drawn directly from medical journals, textbooks and presentations by experts in the field of the periodic paralyses and 2) that which is drawn from surveying groups of diagnosed patients with periodic paralysis.

Both types of information are valuable to patients and caregivers. Physicians and researchers focus on data that can be measured in the lab or examination room. Patients want and need this data, but they also need the knowledge that living day-to-day with periodic paralysis brings. Much like diabetes, the periodic paralyses are disorders in which medicine can only go so far. The physician is no magician. The patient must assume responsibility for managing their diet, comply with the medication routine, maintain muscle mass through appropriate activity levels and learn to manage stress.

The patient with periodic paralysis who leads a successful life is an extraordinarily disciplined person who has no time for self-pity or cowardice. Physicians do not always appreciate the effort patients must make to carry on "normal" lives. Managing periodic paralysis takes a great deal of thought and time, and yet it must not become the focus of one's life. We present these documents in the hopes that they are helpful to both patients and those who love and care for them.