Shared peer advice from polio survivors about what works for them.

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How My Vent and I Underwent Radiation Therapy

Brian Tiburzi

Richard Daggett, California Just because we have one disabling condition doesn’t make us immune to other health problems. I am a respiratory polio survivor who uses trach positive pressure ventilation fulltime. In February 2005, a biopsy of my prostate detected cancer. The initial prognosis was not good. I tried to keep a positive outlook, but it seemed that with every …

High Tech Breathing

Brian Tiburzi

David Cotcher Breathing is fundamental to life. If we do not take in sufficient oxygen or get rid of carbon dioxide (CO2) it affects every part of our body. I had polio at about 18 months and at seven I started to have a curvature of my back that developed into a double curvature called kyphoscoliosis. As I grew my muscles …

Breathing and Sleep Problems in Polio Survivors

Brian Tiburzi

Reviewed by Nicholas S. Hill, MD, Tufts-New England Medical Center, Boston, Massachusetts It is critically important that polio survivors, especially those diagnosed with post-polio syndrome, obtain proper testing, diagnosis, and management of breathing and sleep problems.The problems may result from weak breathing muscles in the chest and abdomen (diaphragm and intercostals). Pulmonary function tests (mostly noninvasive) can measure the strength …

Tests for Breathing Problems If You Have a Neuromuscular Condition

Brian Tiburzi

Reviewed by Nicholas S. Hill, MD, Tufts-New England Medical Center, Boston, Massachusetts If you have a neuromuscular condition such as post-polio syndrome, ALS, or Duchenne muscular dystrophy, you may not realize that your breathing muscles are weak and can become weaker. You may have difficulty breathing in deeply enough to fully expand your lungs or coughing strongly enough to clear …

Is weaning the appropriate goal?

Brian Tiburzi

Users of noninvasive ventilation (NIV) who choke, get pneumonia or have major surgery, and end up trached, many times are transferred either to a skilled nursing facility or to a long-term acute care hospital. They are told they can’t be discharged until they are weaned from the vent. Should complete weaning be the paramount goal, particularly when individuals have used …

Respiratory Infections in Vent Users

Brian Tiburzi

At the 2010 Sleep and Breathing Symposium (Salk Institute for Biological Studies) Louis J Boitano, MS, RRT, RPFT (deceased) explained a protocol developed by John Bach, MD, and Yuka Ishikawa, MD, to reduce the potential for hospitalization due to respiratory infection. Boitano and Josh Benditt, MD, Northwest Assisted Breathing Center, University of Washington Medical Center, use this protocol with all of their …

How Polio Survivors Can Avoid Tracheostomies

Brian Tiburzi

John R. Bach, MD, Physical Medicine & Rehabilitation, University Hospital, University of Medicine & Dentistry of New Jersey, Newark, New Jersey, is in charge of the Center for Noninvasive Mechanical Ventilation Alternatives and Pulmonary Rehabilitation and has spoken and written extensively. His most recent contribution to the literature is “Management of Patients with Neuromuscular Disease” by Hanley & Belfus (2003). Prior …

Pflex® (my new friend) and More and Physician Response

Brian Tiburzi

Carol Wallace, MEd, Certified Rehabilitation Counselor, Austin, Texas I contracted polio in 1951 at age 5. Acute and rehabilitation hospitalization totaled two-and-a-half years with six months of iron lung treatment. Both my upper extremities and are paralyzed with only partial and weak right-hand motor function. As an adult, my forced vital capacity averages 48 percent. I require noninvasive mechanical ventilation …

Breath Control

Brian Tiburzi

You can save energy … by breathing! Say what? Isn’t that what we do all the time? Who even thinks about it? Well, people with asthma, chronic bronchitis or emphysema (COPD) think about it a lot because they have to work hard at it, especially when they exhale. They have difficulty exhaling stale air and that leaves less room in …


Brian Tiburzi

New breathing problems in aging polio survivors can be insidious and often not recognized by either polio survivors or health care professionals. Individuals who used an iron lung, or barely escaped one, during the acute phase should be aware of potential problems to avoid underventilation and possible respiratory failure. Those survivors who did not need ventilatory assistance during the acute …