Timothy Zingale never had the chance to be a little boy. There was no bike riding or climbing on the jungle gym. No water balloon fights or cops and robbers, either. Instead Timothy had to concentrate on more important things, like walking.
Similar to many of the 1.6 million individuals who contracted Polio during the epidemics of the 1940s and 1950s, the disease left Timothy Zingale severely crippled. He was only 4 years old.
"When growing up the kids in the neighborhood would not play with me for they thought they would catch polio from me, which was false." said Zingale.
Zingale, however, didn't let his disability slow down his life or get in the way of his career. "I had a total of 15 operations to correct the defects of polio," said Zingale. "I had several on my left foot to straighten it out, one on my left hip to help me stand straighter, one on my right foot to make my ankle work, et cetera. They were all done so that I could walk better and be a productive member of society."
And as a productive member of society, Zingale graduated from college with a bachelor's degree in elementary education and taught school for three years, but the job was not easy to get. "Throughout my life time, I always had to explain about my physical condition first," said Zingale. "That was frustrating."
After teaching, Zingale went on to seminary school, and became a Lutheran pastor.
"I had been interested in religion for a long time," he said. "I was active in my church as a youth. I think I found it a place where your physical fitness did not matter. It was a place where I could be accepted as I was."
Fate struck again, however, and Zingale became polio's victim for the second time in his life. While he had overcome the damage that Polio had done to his nervous system years ago, the nerves that did survive were forced to work overtime and one by one they were wearing out, resulting in a condition known as post-polio syndrome.
More than 300,000 polio survivors in the United States may be at risk for post-polio syndrome (PPS), according to the National Institute of Neurological Disorders and Stroke (NINDS). PPS is a condition that can strike polio survivors anywhere from 10 to 40 years after recovery from the initial attack of the poliomyelitis virus. And although doctors are unable to establish a firm incident rate, they estimate that the condition affects 25 percent of these survivors.
For many polio survivors PPS is hard to diagnose. NINDS says that the only way to be sure a person has PPS, is through a neurological examination aided by other laboratory studies that will exclude all other possible diagnoses. Also patients must visit the doctor periodically to establish that their muscle weakness is progressive. Many patients who are eventually diagnosed with PPS worry that they have the polio virus again, but studies have shown that PPS patients lack any elevation of antibodies against the polio virus. And because PPS only affects certain muscle groups, it is not considered a reoccurrence of the original polio.
The symptoms of PPS are numerous and debilitating, but it is generally believed that the extent to which polio survivors will suffer from PPS depends on how seriously they were affected by the first polio attack. Patients who had only minimal symptoms from the original attack and subsequently develop PPS will most likely experience only mild PPS symptoms, according to NINDS. Conversely, people who were originally hit hard by the polio virus may develop a more severe case of PPS.
Symptoms of PPS include fatigue, slowly progressive muscle weakness, muscle and joint pain, and muscular atrophy. There are a variety of other problems as well, including a variety of sleep disorders, breathing and/or swallowing difficulties, gastrointestinal problems, and muscle twitching. And although PPS is rarely life threatening, some patients can develop spinal muscular atrophy, or what appears to be, but is not, a form of amyotrophic lateral sclerosis (Lou Gehrig's Disease).
For many reasons, PPS seems to be harder on many individuals than the original disease was. The Easter Seals of Colorado, who has an extensive PPS support group, says that because these individuals felt they had "beaten" polio, re-experiencing the pain and weakness is traumatic. "All my life I did not feel disabled," said Zingale. "I wore a brace, I either used crutches or a cane but I did not feel disabled. And now after 10 years in the chair I accept it and I am more disabled than I have been all my life." There are support groups that help those who have been diagnosed with PPS, who often feel like they are "crazy." Many others are treated for post-traumatic stress disorder because of their age and isolation at the time of the initial attack, and the fear associated with the whole experience.
For Zingale, PPS cost him his job as a Lutheran pastor. "I can not preach any longer because we found out that the polio affected my vocal chords and I had been over using them and compensating all my life." It's hard for Mr. Zingale to say anything now, and just talking requires so much work that he can't do it for long periods of time. He can not walk, either, and is confined to a wheelchair, but it's the speaking that bothers him the most. "Preaching was the one thing I enjoyed the most in the ministry," said Zingale.
As widely available as support groups are for people with PPS, medical help is altogether another story. Many drug therapies have been tested with disappointing results. A study in which PPS patients received high doses of a drug called prednisone, a synthetic hormone or "steroid," demonstrated a mild improvement in their condition, but the results were not statistically significant. And in addition to the drug's side effects, researchers were led to recommend that prednisone not be used to treat PPS.
Other drug remedies have been tried by scientists at the National Institutes of Health (NIH) including ones to combat fatigue, and a drug thought to improve strength in PPS patients. Another experiment done last year by doctors at the Baylor College of Medicine, in Houston, TX, studied whether or not pain felt by PPS patients could be relieved by application of magnetic fields applied directly over an identified pain trigger point. The procedure was a success, and was found to help PPS patients significantly and quickly reduce their pain.
Because scientists are working on a variety of investigations, relief for individuals with PPS may not be too far away. Some researchers are searching for the polio virus, or mutated versions of it, in the body, because fragments have been found in some people's spinal fluid. The significance of the finding, however, is unknown, according to NINDS. Researchers who discovered inflammation around motor neurons in the muscle are trying to find out if this is due to a response from the immune system. Some researchers are studying the behavior of motor neurons many years after a polio attack, while others are looking at the mechanism of fatigue. But until a cure is found, survivors of polio and patients of PPS have to find other avenues to relieve their pain.
Exercise usually has natural health benefits for people, no matter what age or gender. For patients with PPS, this may not be the case, and exercise may even worsen their condition, according to some doctors. Some doctors believe that too much exercise can worsen the patient's condition, and that rest will preserve energy, according to NINDS. These doctors believe that patients might wear out their muscles by overusing them, and according to Zingale, this might be true.
Zingale reached his peak at age 22 by working hard through his surgeries and exercises. 20 years later, when he started suffering from PPS, he found he was no longer able to work through the disease. "Now the more I do, the worse I get," said Zingale.
On the other hand, many doctors believe that exercise can be beneficial to patients of PPS. They consider the "no exercise" theory unfounded and not scientifically proven. NINDS says that there is much misinformation on this subject and many doctors do not know what effect exercise has on individuals with PPS. Many doctors prescribe a "common sense" approach, in which patients use individual tolerance levels as their limit. That level is the one at which the patient starts having discomfort or fatigue. Researchers at the National Institutes of Health are addressing the exercise issue, not only to determine if exercise is helpful, but to define the most effective type.
Amidst all the confusion of medical help and exercise, a different type of help has emerged for PPS patients. Support groups have popped up all over the U.S and around the world to help patients cope with their frustrations and mental anguish. There are groups such as the Colorado Easter Seals, the Lincolnshire Post-Polio network in the UK, and the Saskatchewan Awareness of Post Polio Society Inc. in Canada. Australia offers an extensive on-line support page called the Post-Polio Network. Information about these and other groups are available through the Internet through a search engine such as Yahoo.com. Many people who have PPS are relieved and encouraged to find individuals, through these support groups, with similar symptoms. They find someone with whom to share their stories and help them deal with the physical changes and abilities, and the emotions associated with these changes. Timothy Zingale knows the feeling all too well.
"I wish people would take me at face value, period," he said. "My wife did at first and that is one of the reasons we got married. She accepted me for who I am."
For Zingale, PPS altered his whole life. "At first I was really down, but now I am used to it," said Zingale. He may have had to quit his job, but he did not stop working. He does the cooking and baking for his family now, in his remodeled kitchen. And since he can't preach anymore, he started a free ministry service on the Internet in which he helps other pastors with their sermons.
Raising his kids became especially hard for Zingale. "In my everyday life I had to plan out everything so I could do it," said Zingale. He tried using a computer to talk for him, but people couldn't understand it. Simple things like talking a walk and keeping an eye on the kids had to be choreographed like the most complex of ballets.
"If I wanted to take them on a walk, I had to push them in a stroller, because when they could walk pretty good, they could get away from me and I couldn't catch them," said Zingale. As his PPS got worse he didn't even have the strength to carry his children, so they were taught to climb onto his lap. Ironically, it is his 16-year-old son who now carries Zingale from time to time.
He learned to walk twice, and twice he had the ability taken away. But more than bridging physical inconveniences, Timothy Zingale simply wants others to understand, and in a few humbling sentences, he summed it all up. "People stare as I use the lift in my van to get in and out. I think people see differences in people as something that affects them. They stare, I think, because they fear they might become like me."