Linda and her husband Terry
Hello from Beautiful South Carolina!
I haven’t written an entirely new Post to this Blog for some time. I guess the reason (excuse) for that is that when you have a Blog about having Post Polio Syndrome, you have Post Polio Syndrome and don’t usually feel like writing a new post for the Blog. I guess another “reason” could be that I have been just plain lazy in neglecting my Blog. For this, I apologize.
I wrote this simple summary explaining Respiratory Muscle Weakness a few months back, because there is so much misunderstanding about how Post Polio can effect someone’s breathing.
Before posting the article to my Post Polio Support Group on Facebook, I had it reviewed by my Physiatrist and my Internist who both said that it was “excellent”. I would welcome any comments about your personal experiences with RMW.
Respiratory Muscle Weakness (RMW) and Bi-Pap and C-Pap use
Written by Linda Rowan
Have you ever been told that you have Respiratory Muscle Weakness? (due to Polio) You can have this even if you didn’t have a diagnosis of Bulbar Polio or were not in an iron lung. This is what happened to me. I use a Bi-Pap at night and have to sleep almost upright (O2 level drops if you lie flat). The Bi-Pap machine (Bi-level Positive Air Pressure) pushes room air into your lungs on the INhale and then the pressure backs off (or lowers) on the EXhale (Bi-level pressure) so we can get rid of CO2 by exhaling it. (which is what people who are “normal” would do naturally.) Most “polios” who have Respiratory Muscle Weakness have trouble exhaling against the Continuous Positive Air Pressure (C-PAP) of a C-Pap. This happens because of atrophying (weakening) of the diaphragm and other respiratory muscles, (chest muscles and intercostal muscles) which are between the ribs, due to Polio. A Bi-Pap lowers the pressure on the exhale so that we can rid our bodies of excess CO2.
If you have Respiratory Muscle Weakness, and are given Oxygen without mechanical support (a Bi-Pap), the lungs “send a message” to the brain which signals the Respiratory Muscles: “we are getting enough oxygen, so you don’t have to work so hard.” Then if the respiratory muscles aren’t working to push air in and out of the lungs, the CO2 can build up which is very dangerous, and can be life threatening. (it would be helpful to read Dr. Oppenheimer’s article on this subject).
This is very complicated. Insurance companies have tried to put people with Polio Respiratory Muscle Weakness on C-Pap because I have been told they are much cheaper (by my Physiatrist). I tried to use one that my Respiratory Technician brought to me ( just to see what it was like) and had a feeling like I was being smothered.” I could not exhale against the continuous air pressure rushing in. *Every Post Polio does not need a Bi-Pap instead of a C-Pap. For instance, if you have Sleep Apnea and Don’t have RMW, a C-Pap may work well for you. We had to submit a lot of documentation to Medicare for them to approve a Bi-Pap for me: A Sleep Study (interpreted by a qualified Sleep Technician and/or your Physiatrist or Pulmonologist) A PFT (Pulmonary Function test), the VC (Vital Capacity) of your lungs, (mine was 31%) were required. And an ABG (Arterial Blood Gas, done in Respiratory at the hospital by a Respiratory Technician) to test if you are retaining CO2, was done, and a prior diagnosis of Post Polio Syndrome. If you have Respiratory Muscle Weakness and are not on Bi-Pap (yet), you may experience some or several of the following symptoms. Talk to your Pulmonologist or Physiatrist ASAP.
- morning headache
- confusion, or other cognitive deficiencies
- excessive daytime fatigue and sleepiness
- shortness of breath, and inability to have a productive cough
- problems speaking without taking breaths between words
- unexplained muscle pain in the chest and trunk muscles
- trouble sleeping lying flat
Some of these symptoms may also be caused by other problems, such as heart trouble, (shortness of breath). The purpose of this article is primarily to explain what Respiratory Muscle Weakness is, and the difference between a Bi-Pap and a C-Pap. I hope that after reading this you have a better understanding of RMW.
Oxygen Not Recommended for Hypoventilization for Patients with Neuromuscular Disease
(Dr Oppenheimer’s article and others):
Summary for Anesthesia Issues for the Post Polio Patient: