The Patient and Caretakers Section
Submitted by deb on Wed, 07/06/2011 - 17:52
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 of medical conditions.
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 seem that the dominant focus in one's life is periodic paralysis, but as the news sinks in and adjustment comes a new balance can be achieved.
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.
Submitted by deb on Mon, 07/04/2011 - 00:04
People with Hypokalemic periodic paralysis, and some Andersen-Tawil Syndrome patients, need to eat a diet low in carbohydrates and sodium, since both carbohydrates and sodium trigger attacks. But how do you do it? Here are handy tips on how to plan a diet that is reduced in sodium and carbohydrates.
Tips on Reducing Sodium
At Home
Submitted by deb on Sun, 07/03/2011 - 23:34
When I'm in the middle of an abortive attack meal planning goes right out the window. I can look at a fridge and pantry full of food and not be able to figure out what to do with any of it.
The only way to avoid feeding the family cheese on toast and a glass of tap water for dinner again is advance planning.
I can follow clear and simple directions. So if I plan exactly what we will eat for each meal I can;
1) avoid wasting food,
2) feed us something other than crud on rice (which is going to make me weak anyway) and
Submitted by deb on Sun, 07/03/2011 - 23:21
Hospital Management Guidelines for Patients with Andersen-Tawil Syndrome
Patient's Name:
Birthdate: ________Height: _______Weight: _______
Address:
Primary Physician:
Emergency contact: Name: Relationship:
home phone# cell # FAX:
Submitted by deb on Sun, 07/03/2011 - 23:17
Hospital Management Guidelines for Hyperkalemic Periodic Paralysis Patients
Patient's Name:
Birthdate: ________Height: _______Weight: _______
Address:
Primary Physician:
Emergency contact: Your emergency contact should be someone who can speak for you when you cannot advocate for yourself.
Name: Relationship:
home phone# cell # FAX:
Submitted by deb on Sun, 07/03/2011 - 00:24
Use this chart to help determine patterns to your food triggers. Blanks have been left for you to individualize the chart to your needs. Check food labels for sodium content, etc. This chart is intended to be utilized as an adjunct to a food journal.
Submitted by deb on Fri, 07/01/2011 - 22:01
When evaluating patients for periodic paralysis it is vital to obtain accurate results from blood draws. Because potassium levels which vary only a fraction of a point may be enough to trigger weakness in some patients, the lab may need to be made aware of specialized procedures which should ideally be used to obtain samples for K+ evaluation.
From "A Manual of Laboratory Diagnostic Tests" by Frances Fischbach, Page 247-253.
Potassium (K+) Normal Values: 3.5-5.0 mmol/liter 4.0-4.7 mmol/liter (average)
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