Living With Polio

Millions of individuals who had polio are living in all areas of the world. Survivors range in age from a few months to nonagenarians (in their nineties). Aftereffects vary greatly depending on the number and location of the nerve cells destroyed by the poliovirus. The challenge or ease of living with polio varies for each survivor, depending on the availability of medical care and rehabilitation opportunities, and their family and social support.

Advice, hints, explanations, etc., are categorized by topic and are searchable. The source of the material is identified.

Reminder: PHI’s post-polio.org and IVUN’s ventusers.org or ventnews.org features numerous articles to assist in living with polio.

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

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 whenever supine.

How Polio Survivors Can Avoid Tracheostomies

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).

Respiratory Infections in Vent Users

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 neuromuscular patients who have respiratory limitations.

Is weaning the appropriate goal?

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 NIV successfully in the past?

Charles W. Atwood, Jr, MD, FCCP, University of Pittsburgh Medical Center, VA Pittsburgh Healthcare System, Pittsburgh, Pennsylvania.

Tests for Breathing Problems If You Have a Neuromuscular Condition

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 mucus from your lungs.

Opportunities to Participate in Research

NEW STUDY ON AFM AND POLIO A new study concerning acute flaccid myelitis (AFM... More

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