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

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News about people who have made significant contributions to the disability community.

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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 …

Studying Sexual Activity and Chronic Illness

Brian Tiburzi

Deshae E. Lott, Bossier City, Louisiana (2006) The mysterious nature of the human body keeps us engaged scientifically as well as experientially. When our bodies veer from the known norms, it offers us more to explore, which can be both exciting and challenging. Sexuality rests among those fascinating and complicated aspects of human existence. Dr. Rosemary A. McInnes, Sex Therapist …

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 …