Week of March 8, 1999The show begins with Phyllis Rubinfeld, a professor at Hunter College who contracted polio at age seven. What began as a stiff neck quickly turned into extreme weakness and a high fever. As part of her treatment, Phyllis spent two years in the New York State Reconstructive Home and describes her therapy as "torturous." She went from a segregated classroom to the isolation of home instruction and received only five hours of instruction a week. Determined to get a good education, Phyllis kept up her studies by doing her friends' homework. She was one of only two disabled students at her college. After many years, walking became more difficult and she became easily exhausted. Prof. Rubinfeld feels a survivor's denial of PPS stems from society's negative perception of disability and its association with weakness and death.
Dr. Goodwin is then joined by three guests: Dr. Richard Bruno, a researcher, clinical psychophysiologist and director of the Post Polio Institute at Englewood Hospital in New Jersey; Dr. Lauro Halstead, a physician and director of the post-polio and spinal cord injury programs at National Rehabilitation Hospital in Washington, D.C. and himself a polio survivor; and Sparkie Lujan, a polio survivor, advocate and founder of an organization called "Polio - Remember Your Strength," or PRYS. There is discussion of the symptoms of post-polio which include extreme weakness, chronic fatigue, muscle pain, cold intolerance and sleep apnea. A study indicates that even those diagnosed with mild non-paralytic polio could experience post-polio symptoms later in life, especially fatigue. Dr. Bruno discusses an ongoing study of the "summer grippe" of 1947, and indications that Cincinnati children who came down with flu-like symptoms may have actually contracted a mild form of polio. He is currently tracking a number of people who were part of Albert Sabin's original study group, to determine whether they have post-polio symptoms.
Although there has been no major epidemic for over forty years, there are more people in this country paralyzed by polio than multiple sclerosis or stroke, yet for 10 years Congress has refused to put money into polio research.
The emotional devastation of growing up with polio in the '40s and '50 is discussed. Survivors were often taunted by peers and family members for looking different if they limped, used braces or a wheelchair. To frighten patients into walking, some physical therapists beat them. Even where no abuse was present, isolation and separation from their families for months at a time took a tremendous toll. After these experiences, the last thing survivors want is to appear different. As their lives are disrupted by re-occurring symptoms, survivors feel frustrated, anxious and depressed. Survivors often have difficulty finding treatment for a disease which has been abandoned by the medical community. Ironically, a survivor who appears "normal" (or not sick) may have trouble finding a doctor who believes his or her symptoms are real.
Ms. Lujan, and both doctors, said polio survivors can find considerable relief through support groups, by learning that they are not alone in their struggles with PPS.
In terms of treatment, both doctors said that the best course of action for polio survivors facing PPS is to learn to conserve their strength. Over-use of the remaining motor neurons can lead to additional weakness and reduced mobility, they said. Although polio survivors are often reluctant to use assistance, adopting a "conserve to preserve" instead of a "use it or lose it" philosophy can reduce pain and weakness. Dr. Bruno said his studies have indicated that symptoms can be reduced quite a bit if polio survivors take two 15-minute breaks during the day, and put their feet up and relax. New research also indicates that people with PPS tend to be hypoglycemic, he said, so a good diet is also important.
You may e-mail Dr. Bruno at PPSENG@aol.com at the Post-Polio Institute at Englewood Hospital in New Jersey. The Institute has a special program to treat out-of-town patients involving follow-up care by phone, e-mail and/or fax. Call them toll-free at 877-767-8765. You can reach Dr. Lauro Halstead at the National Rehabilitation Hospital, (202) 877-1653, or send him e-mail at lsh@mhg.edu. You may also want to view more information about his new book, 
Managing Polio. You may also want to visit the Licolnshire Post-Polio Network Library online for a wealth of additional information, including a reprint of Dr. Halstead's article in Scientific American.
More information about polio and post-polio syndrome is available from The International Polio Network (Gazette International Networking Institute) at 314-534-0475; from the Post-Polio Syndrome Central Web Directory; from The Polio Society, at 301-897-8180; and from Sparkie Lujan's group, The P.R.Y.S. (Polio-Remember Your Strength) Foundation at 406-626-4600 or 1-888-PRYS-CAN.
Next on the program, Dr. David Almeida of the University of Arizona discusses his recent study of how negative emotions are transmitted in families. He concludes that fathers are more likely to transmit negative emotions than mothers, and that negative emotions are less likely to be transmitted if family members understand and can relate to the cause of their loved one's grumpiness.
Last, commentator John Hockenberry marvels at the complexity of the human experience.
