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 …
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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 …
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 …
Studying Sexual Activity and Chronic Illness
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 …
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 …
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). Prior …
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 …
Proven Energy Boosts
Carol Elliott, polio survivor These are exercises that I find useful in bringing more energy into my daily life. These routines, practiced alone or in combination, have helped revitalize my daily challenge with PPS. Most of these stretches and gentle exercises can be done while seated. As always, check with you healthcare provider to be sure these activities are suited …
CAM: What You Don’t Know Can Hurt You
Barbara J. Duryea, MSN, RN, CPHQ John P. Murtha Neuroscience and Pain Institute Johnstown, Pennsylvania Presented at PHI’s 10th International Conference: Living with Polio in the 21st Century (April 2009) Decisions about your health care are important—including decisions about whether to use complementary and alternative medicine (CAM). The National Center for Complementary and Alternative Medicine (NCCAM) has developed this fact …
Options When a Post-Polio Clinic Is Not an Option
Carol Vandenakker, MD Physical Medicine & Rehabilitation University of California, Davis, Health System Sacramento, California Presented at PHI’s 9th International Conference: Strategies for Living Well (June 2005) A. You must start with a good primary care physician. 1. Keys to finding a good doctor: a. Look for a physician you trust and can communicate with. b. Identify the best hospitals …