Information for Patients and Caregivers
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 the experience of patients diagnosed 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 time and hard work, 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.
Newly Diagnosed? What Do I Do Now?
Coping from the inside out – Learning to Manage Stress
Life on a roller coaster – One Day Up, One Day Down. Dang!
A Physican’s Experience as a Patient:
On 3 April 2018: The journal “Neurology Advisor” published “Primary Periodic Paralysis: A Physician’s Personal Experience as a Patient” by Dr. Annabelle Baughan, the 1st in a series on the challenges faced by patients with Periodic Paralysis in obtaining a diagnosis and care.
Health Care Should Be a Team Sport :
When Eric Dishman was in college, doctors told him he had 2 to 3 years to live. That was a long time ago. Now, Dishman puts his experience and his expertise as a medical tech specialist together to suggest a bold idea for reinventing health care — by putting the patient at the centre of the treatment team. Read more here:
Christine Miserandino’s ‘Spoon Theory’ – What life with a chronic illness is like – This takes you to a redirect page, because she has a video presentation. It’s okay. Posts from the front lines: Conversations About Patient’s Experiences