Updated: February 24, 2021
January 14, 2021
Hello All Group Members,
Are we enjoying the New Year??
If not so much yet, today I am offering you something to do as I share news of the latest from Post-Polio Health International’s (PHI) “Spark” program. “Spark” was created to provide events and ideas to post-polio support groups to help us get through the difficult pandemic period with things to keep us all involved. This current program gives us a method to honor and recognize health care workers who have meant a lot to us either recently or over the years.
This is an opportunity to acknowledge a medical provider or first responder who has made a difference in your life. Follow the instruction detailed to the right and submit your honoree’s information, picture and a donation check to PHI.
Stay tuned and stay healthy. I am looking into possible zoom meetings that may interest many of you.
January 7, 2021
Seasons Greetings Group,
Well, given the year we have just experienced, we may either laugh or cry at how we must celebrate the holidays this year.
I choose to laugh, although it is not easy. Any other year we might be meeting at Camp Ticonderoga for our Christmas lunch. But that is any other year.
So this year we must make do and count our blessings! And no doubt we all do have blessings to think about during these holidays.
I am thankful that despite the fears and restrictions of this pandemic many of us did indeed manage to safely gather together for two support group meetings. We did not let this virus keep us from spending a little time together in 2020. We had no frills, not even any coffee, yet I would say we enjoyed being together anyway.
So what does the future hold for our group?? Just maybe with impending vaccines people will actually be able to again safely gather indoors by next summer.
It is my desire now, with your support and continued interest, to be sure that we have a mostly normal series of meetings in 2021. Heck, we might even have coffee!
I also hope to plan another webinar sometime this winter in conjunction with PHI's Specialist Speakers. Stay tuned for that.
For now, do your best to find many ways to be happy during the Christmas holidays. And, of course, stay healthy.
SOUTHEAST MICHIGAN AND ANN ARBOR AREA
POST-POLIO SUPPORT GROUPS PARTICIPATED IN A
PHI HOSTED INTERACTIVE WEBINAR
November 9, 2020
Recently a number of the Southeast Michigan Post-polio Support Group’s members joined with the Ann Arbor post-polio support group (The Post-Polio Connection) in participating in a PHI-hosted webinar during which Dr. Frederick Maynard, physiatrist and renowned polio, post-polio expert, leisurely answered many questions from all on a wide variety of questions ranging from Covid issues to many post-polio issues to general questions related to aging.
Post-Polio Health International (PHI) has introduced a program designed to assist support groups around the country to continue their work helping polio survivors. Accordingly, PHI has formed a zoom meeting speaker’s bureau comprised of PHI board members who are all national post-polio specialists, which these two groups together were pleased to take advantage of. The format of this 1½ hour meeting was an “Ask the Doctor” session. Dr. Maynard initially made some opening remarks which were followed by an informal interactive exchange whereby participants were able to discuss our concerns and get answers to our individual medical questions regarding post-polio issues or just aging in general. The reaction of those participating was unanimously positive and all were looking forward to the next PHI webinar.
You can support Post-Polio Health International by using the AmazonSmile Program. Amazon will donate 0.5% of your purchase price to PHI. You get the same great Amazon products at the same price and PHI will receive a donation! It’s a great way to support PHI and all it takes is for you to designate us at https:\\smile.amazon.com as your preferred charity. Just enter “Post-Polio Health International Inc” in the search box and start shopping and supporting PHI!
Southeast Michigan Post-Polio Support Group
September 15, 2020
YES, OUR GROUP WILL MEET OUTDOORS ON
SATURDAY SEPTEMBER 26TH at 10:00 am
Greeting Fellow Members,
I am quite pleased to confirm with you all that we will indeed be holding our support group meeting outdoors next week.
An encouraging number of you have responded that you are interested in being part of a second outdoor meeting. The church has confirmed that they will set up and remove all of the chairs that we will use for our meeting.
Things to Remember:
-Please wear a mask while you move about. You may remove it when seated.
-No food and beverage will be provided. Bring your own should you desire.
-Chairs will be provided. There will be no tables.
-Again, as with the last meeting, there will be no agenda and no speaker. Beyond an announcement or two and maybe a joke, this gathering is simply social to allow our members to chat and to celebrate that Covid did not stop our group.
-The church restrooms will be available to those who have need.
-The meeting will be brief and probably not even last a full two hours.
On behalf of all of our facilitators, I look forward to being with you all on September 26th at 10:00 am. All we need now is nice weather!
If you have any questions, please contact me.
September 10, 2020
Subject: Possible Second Outdoor Meeting on Saturday September 26
The possibility remains that our group might yet meet safely outdoors a second time before the weather turns cold. But time is fleeting!
Those of you who attended our first outdoor meeting recently may want to return. Those of you who were unable to attend may want a chance to do so.
HOWEVER, I need to measure the level of interest before I ask the church to go to the trouble of setting up and taking down the chairs on a Saturday.
Would you attend a second outdoor group meeting on SATURDAY SEPTEMBER 26 FROM 10:00 to no later than NOON in the parking lot of the church where we always meet in Troy?
If so, please reply to this email on or before Wednesday September 16 if you wish to attend.
If there are enough members who reply positively indicating that they will attend, I will contact the church to make arrangements on September 16 and I will send out a notice to all of you confirming that we will indeed have a meeting.
This may be our final chance to get together this year. I would be pleased to see you on September 26 if you are interested or available.
Please let me know on or before next Wednesday.
On behalf of all of your facilitators,
August 26, 2020
Greetings Support Group Members,
As promised, our support group did indeed meet safely outdoors last Saturday morning.
Here are a couple of pictures of that gathering:
We enjoyed a beautiful morning under copious shade trees just outside the back door of the church where our meetings are always held. We were all seated safely, socially distanced and we could have easily safely accommodated additional members.
The meeting began with a moment of silence honoring three of our group members who have passed away during this pandemic period. We had just learned of the most recent member's death two days before the meeting. Long time member Marilyn Wallis passed away last April. There were no other details available regarding Marilyn. Before her, Mike Davis and Rita Goodwin had also died during the lockdown. We dedicated a few minutes of silent thought in their honor.
Following a few brief announcements, we spent the rest of the time together socializing. We shared our experiences during the lockdown and simply caught up with one another.
To a person, we agreed that it was a very pleasant event and we were happy to have had the opportunity to see familiar faces. We ended the meeting looking ahead to 2021 at which time we really hope for a more normal schedule of support group meetings.
While nothing is planned, it is within the realm of possibility that we might host another outdoor gathering this autumn. We shall see.
Here is the latest global polio news:
It was just announced that Africa has finally been declared free of the wild polio virus with no new cases in the past four years.
That is great news. Now polio is endemic in only Afghanistan and Pakistan.
On behalf of your facilitators, I wish you well.
Coronavirus (COVID-19) and Poliovirus
Prof. Michael Kossove
Those of you reading this, born
after 1955, have little or no recollection of polio or you do because a family
member was affected. Poliovirus was the
most dreaded disease of the 20th Century, Coronavirus becomes the
most dreaded disease of the 21st. Century. Both diseases were pandemic (worldwide), and
epidemic in the United States. Both
were caused by viruses, although very different viruses. Poliovirus has been around since ancient
times as seen in hieroglyphic tablets showing a man with an atrophied leg, and
walking with a stick. Coronavirus has
been around for years. In fact, many of
you reading this had coronavirus. It is
responsible for about 7% of the common colds, and you would not have known that
you had it. This coronavirus is called a
“novel” coronavirus because it was mutated (genetically changed), on purpose,
in China. Eventually, the “why?” will
come out in the future.
Both viruses appeared at different times. Poliovirus appeared from approximately June through October, (the warm weather), and this Coronavirus, like influenza virus, in the colder weather. Since it’s new, that remains to be seen.
A virus is not alive. They use the term “live virus” to mean an active virus. Bacteria are alive. They are called “cells.” A cell is the basic unit of life. Viruses are called virons or virus particles. A single bacteria, or any other cell can do everything your body can do. It can, eat, breathe, drink, rid itself of waste, divide, and even communicate with other cells. They have protein factories that make proteins for various jobs inside the cell. A cell works 24 hours a day, 7 days a week, without compensation, and it can’t strike. Some cells have a long life, and others are produced for a short time, like your blood cells.
A virus is something like a rubber ball. It’s made of a protein coat, some have an envelope around it, with spikes containing enzymes. These enzymes allow the viruses to enter and leave the cell it infects.
Inside the virus, there is nothing but genetic material (nucleic acid), DNA or RNA, containing the recipe for that specific virus. Once a virus gains entrance into a cell, it uncoats, releasing the recipe. The recipe goes to the cell’s protein factories and the cell begins to manufacture the virus. A cell can make hundreds of virus particles. The viruses can then bud out of the cello, or it can destroy the cell, releasing those viruses to attack other cells. This is called “replication.” A cell reproduces.
There were three types of polio viruses. You could have caught Type I, 2, 3, any combination, or all 3. Poliovirus entered the body through close contact (like coronavirus), or through contaminated food and water (unlike coronavirus). Once poliovirus gets into the body, it has to find a cell to attack, and that means that the cell must have a receptor site for that virus. The receptor sites for polio were at the axons (extensions) of the nerve cell that run from the brain down the spinal cord. Once the axon is destroyed, the electrical current stops. If that nerve stimulated a muscle, that muscle becomes inactive, and the person is paralyzed. As the virus attacks axons, many muscles are damaged. If the virus gets to the base of the brain controlling respiration and heart rate, people die, or must be placed in respirators to breathe.
Coronavirus takes a different route. It enters the respiratory system. The damage to the lungs is not caused by the virus per se, but from the immune response to the virus in the lungs. Fluid leaks into the lungs, thus causing the pneumonia and respiratory problems. These people must also be on a respirator. If a person affected with coronavirus is a senior, or has underlying conditions, the immune response is not as strong. People die.
In 1954 and 1955, the polio epidemics were the strongest. 15,000 – 20,000 or more people who contracted the virus were paralyzed. This effect remained lifelong. However, not everyone was paralyzed. Only 5/10 of 1% who contracted the virus were paralyzed. If a child or adult was in a swimming pool with others, and only got sick, why didn’t the others. They all had to have come into contact with the virus. Probably because the one affected had the receptors for the virus, and the others did not. However, the others still came in contact with the virus. Polio is an Enterovirus (gut) and it might have caused diarrhea and other mild gastrointestinal problems. There were no testing kits for poliovirus. We have no idea, unlike coronavirus, how many had the polio antibodies, and did not get sick.
During the polio epidemics people were as shaken as we are now with coronavirus. Common areas like movie theaters, swimming pools, restaurants, and where people congregated were closed. Spacing, they didn’t call it that then, was important. Cluster areas were shut down, like now, and people were told to stay in. Sound familiar. At the end of the summer, each town or neighborhood had one or more polio survivors. It wasn’t uncommon to see people walking with leg braces and crutches, or in wheelchairs. Although polio affected mostly children, it affected young adults, parents, and grandparents.
It took 30 years to break down the codes for the 3 poliovirus nucleic acids, and prepare a vaccine. We didn’t have the biotechnology then to do it in the very short time it did for coronavirus. When the polio vaccine was developed, the decline became very apparent. There was no Food and Drug Administration to require long trials. Once the vaccine showed promise, it was administered everywhere. Soon, it appeared that a small amount of children were getting “vaccine-related polio.” It seemed that the laboratories making it, could not adhere to Dr. Salk’s standards. That was soon changed, and the vaccine administration continued.
What about the coronavirus vaccine? The Salk polio vaccine was made from the actual virus. It was treated so that the nucleic acid was destroyed. It could not cause polio. But, like I said, in a small number of cases, it did. The companies that made it did not properly kill the nucleic acid. Dr. Sabin’s liquid vaccine was a weakened poliovirus. It wasn’t supposed to cause polio. However, as it went through the digestive system causing a gut immunity to polio it was eliminated in the feces. Sometimes it got its strength back. Mothers, fathers, sisters, brothers, and grandparents changing a child’s diaper could have come in contact with the viruses and gotten sick, and many did.
Now we need a coronavirus vaccine. I was very happy to see that the vaccines in trials are made from parts of the virus, not the entire virus. This eliminates vaccine-related coronavirus.
We don’t know what the aftereffect of coronavirus will have on those who were on respirators. Only time will tell. Polio had a life-long effect, and after effect. Approximately 20 – 40 years after recovering from polio, and possibly recovering some muscle use, polio survivors began going backwards. New paralysis, pain, fatigue, atrophy, and more, we call “Post-Polio Syndrome.” Many are worse than they were when they were first affected. Back in braces and crutches, or wheelchairs. Those who were in the iron lungs are now experiencing respiratory and swallowing problems. It seems that polio was the only disease known where non-affected nerves (if there were any left) grew sprouts (extensions) into the affected muscles, restoring electricity. Survivors re-gained partial or all movement in the affected muscles. Many people got sick, and had no affects. That was called “non-paralytic polio.” These sprouts begin to disappear, leaving the survivor paralyzed again, many times worse than they were originally. Possibly due to overuse, and/or an autoimmune problem. Those with non-paralytic polio all of these years are now experiencing the real effects of the disease. They are now using assistive devices to walk.
For those of you who recall the polio epidemic perhaps now you can make the similarities between what we went through then with the polio epidemics and what you are going through now with coronavirus.
If you are a polio survivor, and never received the polio vaccine because you thought that you were immune. Think again. There were 3 types. Which one or combination did you have? If you didn’t have all three, you could get polio again if there was another outbreak. That could easily be determined by a simple blood test called a “polio titer.” If you don’t have antibodies to all 3, get immunized. It will not exacerbate post-polio syndrome. Remember, as a survivor, you were in the tiny percentage that got sick. You are susceptible.
For parents that think polio is a thing of the past, think again. I said in the beginning that virus is not alive. It is still endemic in third world countries and people travel. The vaccine cannot give your child, or children polio. That’s a thing of the past. The vaccine is safe. You say, “What are the odds that my child will get polio?” The odds are greater than winning Lotto. However, someone wins Lotto. Should a cluster of polio appear, and your child becomes paralyzed, you are responsible. Think of your child in a wheelchair and leg brace, watching his or her friends playing in the street, and asking you, “Why am I like this? They will grow up, and they will find out. Don’t even think about playing the odds with your children’s health, and future. Get them immunized.
Prof. Kossove is Professor Emeritus, and Adjunct Professor of Microbiology at Touro College, School of Health Sciences. He’s also a polio survivor.
Thoughts on Covid-19 for Polio Survivors
Prof. Michael Kossove
School of Health Sciences
The panic associated with Coronavirus brings back memories of the 1950’s, and the Polio epidemics where 50,000 people were paralyzed each year, and several hundred died. It’s impossible to predict how many people had the virus and didn’t know it. Had they been tested (there were no tests then), they would have tested positive. Oh, the panic in the summers associated with polio. You have to be a polio survivor, or a family member, to remember that time.
So, now we have the Coronavirus. We’ve always had the Coronavirus. Approximately 10% of the common colds are Corionavirus. This is a “Novel” Coronavirus, because it’s different. It’s a mutation. Influenza Virus mutates every year, millions get it, and thousands die. In our age, the ones that get it were not immunized, or if they were, had mild cases. So here we are again. A new virus, and no vaccine. By next winter, there will be one. While polio infected people in the warm weather, Coronavirus, unlike Flu, infects people in the late Fall, Winter, and early Spring.
We know that people over 60, with underlining conditions, are most vulnerable. That’s us. Yes, it can be scary. They talk about respiratory conditions, and diabetes. That covers many of us.
Let’s talk about this crazy virus. This disease is called a Novel Coronavirus. It was officially named COVID-19 on February 11, 2020, by the World Health Organization. The provisional name of the new virus stemmed from the year it was first seen (2019), the fact that it is new(n), and a member of the Coronavirus Family(CoV). It’s called corona because it is shaped like a crown.
Symptoms can include the same as a cold, such as a runny nose, fever, fatigue, and respiratory symptoms.
Bats are known to harbor a wide range of viruses including many that are highly pathogenic to humans. Bats can carry the virus without getting sick. Initial cases occurred in people who worked at or visited the Hunan seafood market in Wuhan, China, where a variety of wild animals were sold. China has a long tradition of eating wildlife, especially in Southern provinces, including bats. They hunt bats in caves, bring them to the market live, and bats shed excretia in the market.
It’s hard to say how long the virus can exist outside the body. On copper and steel it’s about 2 – 9 hours, cardboard or plastic longer.
Transmission can occur when a person touches a contaminated object or surface, then touches their mouth, eyes, and inside their nose, or by sneezing or coughing, sending the virus into the air.
What should I do to stay healthy?
- Wash your hands often with soap and water for at least 20 seconds. An easy way to mark the time is to hum the “Happy Birthday” song from beginning to end twice while scrubbing.
- Use an alcohol-based hand sanitizer that contains at least 60% alcohol.
- Avoid touching your eyes, nose and mouth with unwashed hands.
- Avoid close contact with people who are sick.
- Stay home when you are sick or becoming sick.
- Cover your cough or sneeze with a tissue (not your hands) and throw the tissue in the trash.
- Clean and disinfect frequently touched objects and surfaces.
- Getting a flu shot is recommended.
If you have to shop, do it early morning or at supper time when there are fewer people in the store.
Stockpile essential items that you use daily.
Make sure you have enough medications to last you about a month.
Since polio survivors are seniors, with underlining conditions, especially respiratory, stay home. Read books, watch TV, walk or wheel around the outside of the house.
you do, there’s no need for panic. Epidemic does not mean Panic. It
tells us to take precautions
We deeply regret the passing of
Michigan Polio Network Board Member
Mike W.R. Davis
on April 11th from complications of the Covid-19 virus
Mike was a wealth of information on a variety of subjects and had a vast network of friends.
Through one of his friends the Michigan Polio Network began working with The Oakland University William Beaumont School of Medicine to further our message on post-polio. He will be sorely missed.
Mike was deeply invested in the Detroit historical community, especially automobiles, and was a published author on that topic. That same deep interest extended to his commitment to the survivors of polio, perhaps because he was one. Mike served on the board of the Michigan Polio Network, Inc. promoting awareness of polio survivors and the devastating, lifelong disability they experienced because of contracting the polio virus. Ironically, he bravely survived one viral epidemic to be a victim of complications from contracting the Covid-19 virus. He was acutely aware of, and interested in, the effects of a viral pandemic on a community, and especially one caused because of lack of a vaccine! Thank you, Mike, for all your interest in your fellow polio survivors......you were a tremendous asset to both the local Post-Polio Support Group and as a board member of Michigan Polio Network, Inc.
Southeast Michigan Post-Polio Support Group
Dr. Keith Roach.
Associate Professor of Clinical Medicine, Weill Cornell Medicine
Click title above to read how attending a Post Polio Members Group meeting provided advice, assurance and guidance for a young boy afflicted with AFM.
"That meeting reassured me
and gave me such insight,"
"They all said polio didn't limit their success. They had careers. They had families. They made me see that Lucian will do those things, too."
Cick below for additional information
Final Michigan Polio Network Board of directors
Gwen Dyc-Schwendenmann, Carl Fenner, Bruce E. Sachs, Bonnie Levitan,
Laura Barbour, Diane L. Dych-Sachs, Vera Hazel, Timothy P. Brown, Rick Kugel,
Virginia Brown, Michael Scharl, Dan Matakas (left to right)
Mike W.R. Davis, Janice Gross, Roger Gross (bottom left to right)
More than 200 cases of polio-like illness under investigation; 80 confirmed
By Debra Goldschmidt, CNN
Updated 10:58 PM ET, Tue November 13, 2018
(CNN)There have been 80 confirmed cases of the polio-like illness known as AFM in 25 states this year as of Friday, the US Centers for Disease Control and Prevention said Monday.
In addition, there are 139 cases under investigation for a total of 219 confirmed and suspected.
This is eight more confirmed cases than the agency reported last week and 20 additional patients under investigation.
The CDC noted an increase in reports of patients under investigation who began experiencing symptoms in August, September and October. It has not identified the 25 states with confirmed illnesses, nor has it said how many states are reporting cases under investigation.
AFM, or acute flaccid myelitis, is a rare illness that affects the nervous system, especially the gray matter in the spinal cord, and can cause muscle weakness and sudden onset of paralysis. Last month, the CDC said that 90% of patients since 2014 have been children under the age of 4, although adults can also develop AFM.
Other symptoms include drooping of the face or eyelids, difficult eye movement, trouble swallowing or slurred speech.
Research is underway to determine the cause of AFM, although there is a focus on enteroviruses, which can cause respiratory illness and West Nile virus, and other viruses in that family.
According to the CDC, there have been 404 confirmed cases in the United States since August 2014. The number of cases may be higher, but the condition is not subject to mandatory reporting, so not all cases are reported to state health departments and therefore may not be counted by the CDC.
"Even with an increase in cases since 2014, AFM remains a very rare condition. Less than one in a million people in the United States get AFM each year," the CDC says.
AFM peaks every other year seasonally in late summer and fall. but experts have yet to identify a single factor geographically or otherwise to explain the cause. Also unknown: why some patients recover and others have prolonged effects.
This story has been updated to clarify the total number of AFM cases, how many are under investigation and how many are confirmed.
From Polio Perspectives, Vol 26, #4 2011
From Polio Perspectives, Vol 12 #2 1997
In the news...