You are here:----For Patients with PPS, the Worst is Gone but not Over

For Patients with PPS, the Worst is Gone but not Over

Remember polio and the Salk and Sabin vaccines? For many, the vaccine came too late.

Susan Payne Gato, RN, had always been active in her adult life, but now, working as a professional nurse, she was unusually fatigued and experiencing leg pains. She had difficulty swallowing and was having sleep problems. Gato consulted with a number of physicians, received physical therapy for a year, and was treated for pain. Eventually, she had to leave her nursing position. Finally, one physician recognized her various symptoms and diagnosed it as Post-Polio Sequelae, also known as Post-Polio Syndrome, or PPS.

The Past

When Gato contracted polio at the age of 2, she was placed in an “isolation ward,” where she could only see her mother through a window. As often happens during that developmental age, she “turned her back” on her mother and formed a close bond with the staff. At that time, many children had to be placed in an “iron lung,” a machine that fully encased the body and assisted with respirations.

Gato eventually returned home, wearing a metal brace on one leg. Like many other patients with polio, Gato knew little about her disease. “We were told to hide our disability, try to act as ‘normal’ as possible, and discard our assistive devices as soon as possible,” she says.

Susan Payne Gato, RN

The Facts

Polio is a crippling, highly infectious, and sometimes fatal virus that largely attacks young children. It has been eradicated in most of the world, except for pockets of India, Nigeria, and Pakistan, where polio remains endemic. As a result of immunization, indigenous poliomyelitis has disappeared from the U.S. The American Academy of Pediatrics continues to recommend that parents have children vaccinated, because polio viruses are highly contagious. Immunization is esssential for children who may be visiting a country where polio is a problem, or for those who may be exposed to visitors from those countries.

Although efforts persist to prevent new cases of the virus, many survivors of polio are still suffering from the effects of PPS, a crippling condition that weakens patients decades after their initial polio attack. Individuals with PPS display unexpected and often disabling symptoms, such as overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold intolerance, and difficulty with swallowing and breathing. These symptoms occur approximately 35 to 40 years after the polio virus attack in 75% of paralytic and 40% of “nonparalytic” polio survivors. There are approximately 2 million North American polio survivors and 20 million survivors worldwide (www.englewoodhospital.com/medservices.cfm?pageid=198&bc=0,8,158).

“PPS is diagnosed by ruling out all other possible causes for the symptoms,” says Richard L. Bruno, HD, PhD, chairman, International Post-Polio Task Force, and director of the Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood Hospital and Medical Center, Englewood, New Jersey. “After polio, the remaining damaged neurons expend more than 16 times their original effort. PPS is the result of those overworked damaged neurons dying off or failing as a result of what we call ‘overuse abuse,'” says Bruno. He explains that PPS is not a disease. “This is not a case of the polio virus hiding in the spinal cord and becoming reactivated. Rather, it is a breakdown of the body’s compensatory mechanism.”

Conserve to Preserve

Eventually, a patient of hers referred Gato to the Post-Polio Institute, where she learned that although there is no cure for PPS, there are strategies and lifestyle changes that can help survivors. “We need to ‘conserve to preserve.’ Our bodies have been overtired by doing too much work with too few polio-damaged motor neurons. I went through periods of anger and depression; I thought that I had already had polio and managed to live a ‘normal’ life; now I was shadowed by it,” says Gato.

Gato believes that many survivors become overachievers with “Type A” personalities. “I think it’s our way of overcoming the belief that we would not be able to achieve much.” After having had experiences with ‘good nurses’ and ‘not-so-good’ nurses, Gato had wanted to become a nurse, but she was dissuaded. She persisted and completed an LPN course, an OR tech program, and then, after 10 years, she became an RN. Gato managed an Ambulatory Surgery Unit, and now that she cannot work as a nurse she is working toward a horticulture degree. She has learned to pace herself, rest when necessary, and use a scooter as an assistive device.

Support for Survivors

Gato founded The Ocean County Post-Polio Support Group (www.tomsrivernjpolio.org) and is a board member of the Polio Network of New Jersey (www.njpolio.org). Bruno and Gato feel that it’s essential to raise awareness in the medical community. “People with PPS have escaped proper diagnosis for years. After 20 years of research and scores of medical journal articles, many physicians still don’t know that PPS exists. Hopefully this is changing,” says Bruno, who is the author of articles, books, and monographs about PPS.

The 32,000 Rotary clubs around the world are committed to matching the $100 million grant from the Bill and Melinda Gates Foundation that is being used in inoculation programs in Africa, India, Afghanistan, and Pakistan. The need is great for preventing polio, assisting survivors, and promoting greater public awareness, say Gato and Bruno.

To contact Susan Payne Gato, go to www.tomsriver njpolio.org. For more information, go to www.tomsriver njpolio.org, www.ppstpolioinfo.com, www.post-polio.org, www.rotarypoliosurvivors.com, www.cdc.gov, and www.unicef.org.

By | 2020-04-15T15:22:20-04:00 September 22nd, 2008|Categories: Philadelphia/Tri-State, Regional|0 Comments

About the Author:

Avatar

Leave A Comment