Inspiration, news and knowledge from Polio Experience Network
No. 30: Autumn, 1999
…Polio Biology 1 – An Introduction to the Virus, by Eddie Bollenbach
….P.O.S. Library
….The Way We Do It, by guest contributor Margaret In Canada
….”Independent Decisions,” by Dave Graham
….Eaves-droppings from M.I.C., (alias Marion Zoesch)
….WEB FINDS
….The P.E.N. & ink Link
….“A Boy and a Puppy”
………………………………Our Offer (for a mailed subscription)
………………………………Copyright information
Polio Biology I – An Introduction to the Virus
by Eddie Bollenbach
It may surprise you to know that we don’t understand where viruses originally came from. Yet for every life form on the planet there is some virus somewhere that can penetrate and infect its cells. All viruses infect by following a similar process: they attach to a cell, penetrate it, reproduce, and propagate. The propagation step often involves bursting and killing the infected cell and the release of hundreds of new viruses. Polio does this to the cells it infects.
No virus will naturally infect a cell unless there is a receptor on the surface of the cell that the virus can “recognize”. The receptor combines with the virus by attaching to it. This attachment is analogous to a hand slipping into a tight glove. Cells without the proper receptor are not naturally infected. Hence, polio only infects humans and closely related primates, and, only infects cells within those species that have receptors for polio virus. In humans, polio receptors can be found in the upper and lower throat, gut, brain, and on the motor nerve cells (polios-denoting gray matter) of the spinal cord.
Before the advent of the trivalent polio vaccines, polio virus was abundant within our environment. It passed from person to person by ingestion of extremely small bits of fecal material. This could happen through swimming, through food handlers who failed to wash hands properly, or through poor general sanitation. Polio virus is one of the smallest viruses and can be readily transmitted, in large numbers, easily. If the number of virus particles a person ingests is large enough (infectious dose), the virus strain infective enough (virulent), and the resistance of the person low enough (susceptible), the virus attaches to receptors and enters cells in the gut faster than the immune system can clear the virus from the body. Soon, as propagation proceeds, great numbers of virus particles are released into the blood. When virus is in the blood, the condition is called viremia. Eventually viruses find their way to the parts of the brain and spinal cord which have receptors for them. These cells then, unwittingly, take virus in. During propagation within the Central Nervous System, nerve cells (neurons) are killed and cannot divide to replace themselves. Within a couple of weeks the infectious stage ends but virus shedding from fecal material can continue for a few more weeks.
For most of us permanent damage resulted this way. Nevertheless, most of us recovered some function. Recovery involved a number of separate adaptations. For example, we substituted muscles that were less damaged (by nerve loss) for necessary tasks, we sprouted new end fibers from surviving nerves, confering on them a burden for which evolution had not prepared them. The ratio of muscle fiber types changed: the proportion of endurance fibers vs. strength fibers was altered in favor of the endurance type. These adaptations served us well for a long time. Some are failing us now. This is the simplest and most understandable explanation for Post Polio Syndrome. Perhaps, because we are losing more endurance type muscle, manual strength tests on many of us fail to demonstrate the severity of muscle fatigue we experience. Anyway, these are the most likely explanations for the onset of PPS.
Questions do remain however. Why do some polio survivors and not others experience PPS? Is PPS a disease process which is a natural consequence of having polio? Can you have polio with the damage and repair adaptations and remain stable for life? If so, why? To complicate the legacy of our biological interaction with polio virus is the recent discovery of polio virus genes inside the spinal cords PPS patients. These genes are not present in polio survivors without PPS. This seems to be telling us something. And, the obvious question is “do these fragmments of virus cause PPS?”
It is possible to remove the outer protein shell from a polio virus by treating the virus with phenol. When this was done in the 1940’s it was found that the genes inside were infectious without their outer coat. Virus genes could enter cells but were a thousand times less infective than whole virus. We can also assume polio’s genes, in the cords of PPS patients, are defective. That is, they have mutated and are not propagating normally by bursting cells. Perhaps, as foreign viral parts, these genes can trigger inflammation, or interfere with nerve cells in another way. New research may resolve these questions. In the meantime polio virus biology remains ineluctably entwined with our own.
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This article appeared in the “hard copy” version of the P.E.N. & ink by permission of the author. The source was the Lincolnshire Post-Polio Library Website. This is the first article of a series by Mr. Bollenbach on the subject of polio biology. To see the original article at the Lincolshire Post-Polio Library site, please click this link: POLIO BIOLOGY 1. To see a list of the other articles in the series, click HERE.
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Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Polio Outreach Of Spokane maintains a large library… of information on post-polio syndrome and disability issues. The printed material is available, by contacting Librarian, Darlene Hansen
by E-mail at darleneh@cet.com
The material is also available by visiting our web-site at http://www.polionet.org/library/ Remember, you are not alone in your struggle. The problems that you or your loved one are experiencing now have been dealt with by others in the past. Their experiences are documented in some great material, all available in our library. Give Darlene a call and tell her what your difficulties are.
She can send you the appropriate material.
Editors comment: Years ago one of our active contributors was Linda Scott. She was our Librarian and she helped create our wonderful library. She sends along these words to old friends. –
So many of you have asked how I’m doing. The answer is, well! Dick and I continue upgrading our house, not only for comfort while we live in it, but also with an eye to Dick’s retirement and our moving to the Washington Coast. We’ve fallen in love with the hamlet of Moclips. The sandy beach there is hard packed and with care, my scooter will zoom up and down the beach for over a mile. A firm retirement date hasn’t been set, but Dick is already counting.
Part of my being well stems from remembering that not all my body ills are PPS related. Another part is to prioritize what is important in my life, including my family. Then I asked myself what treatment has helped me the most since my PPS diagnosis. The answer, massage therapy.
I feel fortunate to have a massage therapist who makes house calls and understands that a polio survivor’s body is unique. My muscles spasm less, stretch better and oh, I relax when I get my massage. Kathy Rose has a Spokane office and enjoys making house calls. She accepts most insurance plans, but is flexible with those who aren’t covered. Kathy can be reached at (509) 327-4373.
It has been fun keeping in touch with many of you and I trust all of you are finding ways to keep as well as possible. Make good choices that include making yourself happy. Linda Scott
The Way We Do It
Elsewhere in this issue people discussed using adaptive devices to make our lives more mobile, active and/or fun. For some of us that may mean getting braces. Our friend “Margaret in Canada” sent along this excellent advice about the getting and using braces (or “callipers” if you’re British).
Number one: Get a good qualified doctor to prescribe the type of brace you need. Discuss with him/her any difficulties you have with what he says… your feelings about wearing the brace, what exactly it is for, what does he/she expect it will do.
Get a reference from the doctor for a reliable, qualified person to build the brace. Meet with this person and interview him the same way you would interview anyone who was working for you. Find out their qualifications. How long have they been building braces? If you want, ask for references. Ask about the design of the brace and ask if he can show you a prototype of a similar brace. You know your body. Looking at a prototype, you will be able to see what might be a problem for you. This allows you to talk and question. Tell him any problems you have with getting a brace. In my case it is a dropped foot, so I have to wear special shoes and the brace and shoes have to be designed together. Find out if the brace requires any type of upkeep for any moving parts.
You should be measured where the brace is going to fit. Make sure you wear comfortable clothes. I find a pair of shorts underneath ordinary clothing allows for ease of measuring thighs. You have to make sure that any padding is covered with a material that feels good on your skin. This person should be able to answer all questions regarding the material used in the brace. In my case I asked for the lightest material because weight is a factor. I also requested leather covered padding because I knew that for me it works the best.
You should have fittings as the brace is built, so that any problems can be attended to easily. Be as demanding as you can be… you have to wear this thing. If it is not comfortable, if it is constricting in any way, if you don’t like any part of it, speak up! A good brace maker might be able to come up with alternative ways of constructing it. If he can’t, he will explain why not. Make sure you try it sitting, walking, getting into a car, etc.
When you get the brace, wear it as you would any other piece of clothing. Try to do everything you would normally do, so you can see if it really is comfortable. If you find red areas on your body from the brace, or if it hurts or causes discomfort, even a slight discomfort, then it needs to be adjusted right away.
You should go back to the doctor who prescribed your new brace and have him examine you wearing it, walking and sitting. You should have your gait observed to make sure your body is not compensating in some way to wearing the brace. Your gait should be observed frequently. Anyone who knows you well can observe you from the back while you are walking to see if you develop any strange movements such as swinging a leg from the hip, swaying from side to side, twisting the foot etc. If there is a change then you have to decide if it is the brace and it needs an adjustment … or if it is just you.
Hope this helps.
A good brace should be comfortable, and in time should be just like putting on a comfortable pair of shoes.
Peace Margaret in Canada
Independent Decisions
by Dave Graham
Some decisions are harder to make than others. As I get older I am faced with some tough ones. Sometimes I wish these decisions could just be made for me.
“I am sorry Mr. Graham. You can’t read those directions, you missed that stop sign and you are squinting too much. We are fitting you for glasses.”
“I am sorry Mr. Graham. You missed an important discussion, you misunderstood a verbal communication and your family is worrying about you, all because your hearing is not what it used to be. We are fitting you for hearing aids.”
“I am sorry Mr. Graham. You look unsteady on your feet, you seem to loose your balance and we are worried that you might fall. You must use a cane from now on.”
“I am sorry Mr. Graham. You tripped, stumbled and fell down three times last month so we are prescribing a wheelchair for you. You must use it.”
No one wants to acknowledge getting older, but it is a fact that 
cannot be ignored. There are certain decisions that we must make for ourselves. Unfortunately we usually make them too late.
We may endanger others if we drive without necessary corrective lenses. We may suffer a fall because we are too vain to use a cane. Or, we wait until our relationships with friends and family suffer before we start using hearing aids.
I write about this topic because I recently made an important decision about using a wheelchair. I found myself missing out on many outings and activities. It came on slowly. But before long, I had lost a great deal of my mobility. I hadn’t gone to the County Fair for a couple of years. I quit going shopping at the mall. Friends and family quit inviting me to events because they realized my limitations.
We have all heard the words “Pride goeth before a fall.” That comes from Proverbs 16:18. It has unique application in these personal matters of decision.
In fact, the thing that was restricting me was my stupid pride. I was afraid of what other people might think of me in that chair. I couldn’t see beyond that perception to see what opportunities and life I was missing.
I am happy to say that I have eased into using the chair. I am just as much a man as I ever was, not someone to be pitied or ignored just because I am sitting down. And I found that people are very gracious and accepting of my new toy. The chair has given me a new reality, one that demonstrates a new independence.
§
It was July 4th, 1999, Independence Day. The beach lawn area is a perfect place to watch the annual fireworks, which were about to erupt over Liberty Lake. Our family’s traditional outing to cap off the day of celebration had never included Brianna. My four-year-old granddaughter had always been too afraid of the noisy explosions to venture out. This night was no different until she realized that she could sit on Grampa’s lap. Off we went in my new chair.
We had each made a tough decision for ourselves that had enriched our lives.
Overheard at Polio Outreach of Spokane…
Peeking out from my corner during the April meeting of POS, I overheard Sharman’s son, Dr. Kenneth Collins, DDS, say that many of the meds we take may cause less saliva which can lead to our getting more cavities. Some mouth washes, toothpaste and even chewing gums are especially made to help increase saliva production. Guess I’d better go off to the drug store and pick me up some to wet my whistle.
I also overheard Dr. Collins say, “The pain receptors of polio survivors were damaged so more medication is needed for people with PPS.”
Faye was surprised that polio survivors could have a reaction to the Epinephrine in the commonly used anesthetics. When my front tooth was worked on, the dentist kept giving more and more medication. Before I could get back to my hole, the numbness had worn off already.
When I looked out at the May gathering I thought they were talking about addictions. Actually they were talking about gardening! This intrigued me, so I decided to hide in the corner and see what I could learn.
I guess you can grow anything in almost any container. I even heard that you can use a bag of potting soil laid on it’s side and split in the middle. Plant seeds in it and they will grow and flourish! They don’t make miniature bags of soil, so I have to pass up that idea. I do have a rusty thimble I found lying near my hole; I guess I can use that to plant some seeds.
WEB FINDS
A Webfriend, Karen, passed on this very helpful information:
A Drug Interactions Checker. You can enter the meds you’re taking, separating them with a comma, and the checker will let you know of any known risks of harmful interactions between meds. http://www.picoftheweb.com/healing/drugs/l
Karen says, “This is a great site! I entered all of my meds, and it gave me lots of info about interactions plus side effects, etc. Much more information than you find on the product sheets or most of the other websites.”
Service Dogs — have you ever wondered if they could help PPS folk? Here are some sites you should check out:
(Thanks, Cleo, for researching these.)
Traveling? How about renting an accessible van? Check the Accessible Travel Newsletter at EmergingHorizons.com/Horizons/
Family talk…
…….“Thanks for the wonderful Web Site and the links. I suffer from PPS. I lived in Walla Walla for 20 years before retiring and moving to the Gulf Coast. I was a member of the support group there. Is it still active?
…….I am now in a support group, a very active one, in Mobile, Alabama. There are something like 150 members from 3 nearby states. It is a great group of people and have a wonderful web site.” [If you should like to see it , follow this link.]
…….”Thanks again, John L.”
We also received a wonderful letter from David, who said, in part:
…….“I don’t have the words to express how grateful I am to be breathing in oxygen again. Having had polio at the age of 9, I spent several months in an Iron Lung, or the smaller version, the respirator.”
…….He described his eventual ‘recovery’ and then his PPS – how he got to the point where he struggled to breathe. He now has a tracheotomy which has restored fun to his life. He says,
…….“My life is incredibly wonderful. I can see colors for the first time in years. The constant depression I lived with has been lifted and I see life with new eyes. The trade off has been that I have all this enthusiasm to do things but due to post polio I have terrific joint, back, leg, neck and foot pain that keeps me from doing things that my mind thinks I’m capable of doing. I’ve joined a Post Polio support group and have learned so much about overdoing and the results on my motor-neurons and muscles.”
…….David adds: “Thanks to many other Post Polio Survivors such as yourselves, I feel I have support and others that know what I’m going through. … Please Email for any reason.”
A Boy and a Puppy
(author unknown)
ht-year-old boy went to the pet store with his dad to buy a puppy. The store manager showed them to a pen where five little furry balls huddled together.
After a while, the boy noticed one of the litter all by itself in an adjacent pen.
The boy asked, “Why is that puppy all alone?”
The manager explained, “That puppy was born with a bad leg and would be 
crippled for life, so we’re going to have to put him to sleep.”
“You’re going to kill this little puppy?” the boy said sadly while patting it.
“You have to realize that this puppy would never be able to run and play with a boy like you.”
After a short conversation with his boy, the dad told the manager that they wanted to buy the puppy with the bad leg.
“For the same amount of money, you could have one of the ‘healthy’ ones. Why do you want this one?”
To answer the manager’s question, the boy bent over and pulled up the pants on his right leg, exposed the brace underneath and said, “Mister, I want this one because I understand what he’s going through.
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