Updated: May 30, 2023
Southeast Michigan Post-Polio Support Group
2023 Meeting Schedule
Saturday May 27, 2023
Catching up with everyone
Saturday June 24, 2023
Orthotist and Prosthetist
Saturday July 22, 2023
Saturday August 26, 2023
Elder Law Attorney
Saturday September 23, 2023
Area Agency on Aging 1B
All meetings are 10:30am to 12:30pm at The First Presbyterian Church, Troy
Warren, Michgan 48088
When Bonnie Levitan was 11 years old in 1951, she was paralyzed from the neck down for six months.
She lay in a hospital bed in Pontiac, experiencing the “frightening” treatment for polio. Hot packs would be fitted around her body all day, and she was away from her family for long periods of time.
Other children had it worse than Levitan did, though, being put in iron lungs (mechanical respirators that assisted their breathing) that spilled out of the hospital rooms and into the hallways due to the number of polio patients in need of them.
Levitan recalled hearing the iron lungs "whooshing" during the night, which would often wake her up at night.
“When the (iron lungs) stopped (whooshing), you knew the kid had died,” Levitan said. “It was scary.”
It is not just the memories of polio that still stick with Levitan today. She and other polio survivors have faced negative health effects from contracting the disease. With these health effects giving her trouble walking and even preventing her from getting her college degree, Levitan, now of Mount Pleasant, is aiming to form a polio survivor support group to serve the mid-Michigan area.
Those interested in joining the support group should call the Isabella County Commission on Aging at 989-772-0748. The first meeting is planned for April 19 at the commission building at 2200 S. Lincoln Road in Mount Pleasant.
Polio epidemic of the 1940s, 1950s
One of the most serious polio epidemics in the United States happened in the 1940s and 1950s, with many cases impacting children. Midland historian Tawny Ryan Nelb said the Midland area peaked in polio cases in 1949.
The number of cases in Midland increased from 27 in September 1949 to 45 in October 1949, and three Midland children died of polio that October. More than 140 cases were reported in Midland by the end of the year, Nelb said.
Levitan contracted the disease in August 1951 when she lived in the Detroit area, and stayed in a hospital for contagious patients for about six months until February 1952. She then endured a lengthy physical therapy process, which she described as painful from all the stretching she had to do.
There were no phones at the hospital for children to call their parents, who could only visit them on Sundays.
“It was an emotional experience,” Levitan said. “They (polio survivors) are still suffering emotional repercussions from that today, even if they do not remember it. They felt abandoned.”
Polio largely became obsolete following the release of polio vaccines in the 1950s and 1960s. However, Levitan said researchers and doctors did not follow up with those who had contracted polio later on to see if there were any long-term side effects from contracting the disease.
Parents were so frightened by polio that they were happy to move on, too, Levitan added. Children were expected to act and appear “normal” following their bouts with polio.
“When the vaccine came out (in 1955), they slammed the door on polio, even the health care profession,” Levitan said. “They did not follow up with anybody or anything. They were so glad to be rid of the problem.”
Side effects of post-polio patients
But as the decades passed and research was done on polio survivors, Levitan said long-term side effects linked to post-polio were being noticed in the 1980s. She said nobody knew how to treat post-polio, and there is still not much in the way of treatment today, only lifestyle modifications.
These side effects include leg atrophy, high blood pressure, adverse reactions to anesthesia, fatigue, muscular pain, and difficulty sleeping, breathing, swallowing and walking.
Side effects can vary depending on the type of polio that a patient had, with bulbar polio attacking the brainstem and throat, and lumbar polio attacking the spinal cord. Levitan had lumbar polio.
These side effects appeared with Levitan as early as her college career. Levitan’s parents sent her to Western Michigan University in 1958 with the intention for her to stay only two years to find a husband. She later decided she wanted to stay the full four years to get her degree, although this was not an easy task in light of her health.
Levitan worked in retail in order to afford school, walking a mile to and from work for her shifts. After all the standing and walking, Levitan often felt too tired to do homework and was even in muscular pain, which she later learned was linked to her polio.
To make things worse, Levitan was denied her degree at the end of her junior year. At the time, she said WMU required female students to pass “posture exams” in order to graduate. She did not pass this exam based on her scoliosis, which she knows was due to her having had polio.
The Daily News reached out to an archivist at WMU, who supplied pages from an undergraduate course catalog from 1960-61. The catalog indicated that posture counseling was needed for female students to complete required physical education requirements towards a diploma.
As Levitan got older, she had a hard time walking and started using a cane last year. Her legs are atrophied as well.
Many people with post-polio struggle to find doctors, many of whom are not knowledgeable in post-polio or are dismissive of it. Levitan used to volunteer at a post-polio specialty clinic in Warren, one of only about 20 in the U.S., she said.
Because of the lack of education and research following the polio epidemic, Levitan said many polio survivors do not even know how polio has affected their health long-term. Many survivors come from an era when they were expected to keep their feelings inside and move past the pain.
Usually, it takes a catastrophic incident like a major fall or injury for polio survivors to start taking post-polio seriously, Levitan said.
“I have had problems my whole life, but like many polio survivors, that old tape playing in your head of, ‘Never give up, never tell anybody you cannot do something, (and) never admit you have a problem’ is a lifelong problem,” Levitan said.
“As you get older and start getting the symptoms of post-polio, it is terrible advice because now we need to cut back on our activities until hopefully the symptoms of post-polio will subside.”
Parallels between polio and COVID-19
Levitan hopes some of the same mistakes will not be made with the COVID-19 pandemic, which recently marked its third year of reaching Michigan on March 10. Amid discussions related to “long-COVID” and lasting side effects, she hopes doctors will continue to monitor these lasting effects.
Levitan also takes issue with the anti-vaccine movement, saying that polio has mostly been eradicated because of vaccines. When a case does appear, she said it could be because the virus mutated due to many people opting out of the vaccines, like with a recent case of polio in New York.
Nelb said that when the polio vaccine first came out, parents largely did not opt out of it.
“There really was not a choice in the matter at the time, which is something different from now,” Nelb said. “People today made a decision one way or another whether they were going to get the (COVID-19) vaccination. That did not happen with polio. Every parent took their kids in (to get a polio vaccination).”
Hoping to connect with other polio survivors
After running a fairly well-attended polio support group in Metro Detroit, Levitan is trying to form a similar group in Mount Pleasant, where she moved a couple years ago.
The group, which would be run through the Isabella County Commission on Aging, would welcome anyone interested in joining. Levitan suspects that a lot of polio survivors live in the Midland area.
After not receiving enough consistent interest in the group last year, Levitan said she hopes to see at least eight to 10 people consistently at the group meetings.
“There are not many (polio groups) and there are not many places to even get information about post-polio,” Levitan said. “That is why I want to start this group, because we have to be our own advocates.”
Those interested in joining the polio survivor support group should call the Isabella County Commission on Aging at 989-772-0748.