This article is dedicated to the memory of Aleksandr Batutenko, a person who was not afraid to declare publicly his rare disease. It was written by Aleksandr Batutenko’s wife Nadezhda, and it is published here with her permission. Aleksandr was a brave young man who lost his life in December 2012 trying to clarify his…
There are times when a Listserv member writes the perfect thing, producing a post which is simply too good to let slide into obscurity. This is one of those posts; Hi “A”, Many of us are on this path – You are at the place signposted, ‘Anger and Frustration’, which is near ‘Death to…
I am not my body! When you have a chronic illness it’s important to cultivate a positive self-image. Even though there may be changes in a person’s capabilities to perform certain tasks it’s important to remember, “I have a body, but I am not my body.” Your body may find itself strong or weak, it…
One way to cope with stress is to turn down our reaction to it through meditation. Meditation has been practiced in cultures all over the world for thousands of years. It’s now being used with increasing frequency by western physicians and health care organizations to treat a diverse range of medical conditions. The purpose of…
The reaction to a diagnosis of periodic paralysis may be relief, shock, grief, despair, or any combination of emotions. It takes time to adjust to a chronic illness. Long cherished plans and dreams may have to be abandoned, some temporarily, others forever. For a time it may seem that the dominant focus in one’s life…
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…
Submitted by deb on Tue, 07/05/2011 – 15:55 Stories We Tell are e-mail exchanges written by our List members. In this exchange patients discuss the difficulties of see-sawing between between looking fine and lying in a heap somewhere, not always in the place of our own choosing. Imagine walking a 2 x 4 plank spanning the open space…
Submitted by deb on Wed, 07/06/2011 – 17:41 The reaction to a diagnosis of periodic paralysis may be relief, shock, grief, despair, or any combination of emotions. It takes time to adjust to a chronic illness. Long cherished plans and dreams may have to be abandoned, some temporarily, others forever. For a time it may…
Submitted by deb on Wed, 07/06/2011 – 17:45 One way to cope with stress is to turn down our reaction to it through meditation. Meditation has been practiced in cultures all over the world for thousands of years. It’s now being used with increasing frequency by western physicians and health care organizations to treat a diverse range…
Submitted by deb on Wed, 07/06/2011 – 17:52 I am not my body! When you have a chronic illness it’s important to cultivate a positive self-image. Even though there may be changes in a person’s capabilities to perform certain tasks it’s important to remember, “I have a body, but I am not my body.” Your body may…