Post-Polio Health (ISSN 1066-5331)
Vol. 17, No. 2, Spring 2001
Read selected articles from this issue ...
My Journey to a Good Night's Sleep
Marian Gray, Oakland, California
My Search for the Solution
Jean B. Davis, Albany, Georgia
Joan L. Headley, Executive Director, GINI (now PHI)
With special thanks to Judith Raymond Fischer, volunteer editor of IVUN News, this issue of Polio Network News features the breathing problems of polio survivors.
Why dedicate a whole issue to this subject?
#1 – A common misconception about home mechanical ventilation is that it is the same as being in an ICU – unconscious, intubated and connected to a large hospital ventilator – as depicted on popular medical TV shows. Using a ventilator at home is very different, as described by polio survivors Jean Davis and Marion Gray, who sent photographs of their satisfied and well-ventilated selves.
#2 – It is the one aspect of the late effects of polio, besides swallowing, that could be potentially life-threatening. And, in my travels, I continue to hear stories from polio survivors who have breathing difficulties.
#3 – I know many polio survivors who now use nighttime ventilation and feel so much better, but their pathway to this relief was through the emergency room. I believe our Network is obligated to provide knowledge to prevent this from happening to others.
#4 – This issue is a good way to educate polio survivors who, in turn, can educate their doctors. I have heard the comment, "I am not having breathing problems. The physician checked my lungs and they are fine." Or, "The physician checked my breathing and said it isn't bad enough yet and he didn't think I would want to use a ventilator this young."
#5 – The decision about the type of ventilation to use and when it will begin should be made in collaboration with your doctor and your family. The purpose of this Polio Network News is to ensure that the decision is an informed one.
My appreciation to Tony Oppenheimer, MD (deceased, 2005), and to ventilator user Linda L. Bieniek for their insightful reviews.
We all struggled with what to include and how to explain a complex topic briefly and simply – one that really may apply to you.