IPPSO NEWS MAGAZINE

It is ability that counts, not disability

From the Editor's Desk

Mike Isaacson
The theme of this issue is to go back to basics and remind ourselves of what PPS actually is, and what we can do to live with the problem; also to look into the various mobility devices available to us, (wheelchairs and scooters) and to see if there has been any advance made in their design in this technological age that we now live in. It certainly isn't an "in depth" study, but it does make for some interesting reading......... I hope!
I also take this opportunity to wish all of you Happy Holiday over the Easter week-end.

Back to Basics

Sometimes it is a good thing to remind ourselves about what Post Polio Syndrome really is all about......... and how to live with it. Ed
What are the symptoms of PPS?
The main symptom of PPS is new muscle weakness that gradually worsens. It often is accompanied by decreased muscle endurance during activities, muscle and joint pain, muscle wasting and severe fatigue. Even muscles that were believed to be unaffected by the previous bout with polio may be affected. Less frequently, breathing difficulties and swallowing problems may occur. These symptoms usually develop between 20 and 40 years after the original illness.
As many as 250,000 U.S. polio survivors may have PPS. However, not all individuals with one or more of the symptoms described above have PPS. Some (the lucky ones, perhaps) after medical evaluation, are found to have arthritis, tendonitis and cartilage damage, all of which can occur in the aging process but which are more common when movement and weight-bearing have been altered by the effects of weakened muscles. Various other conditions also cause progressive muscle weakness or fatigue.
What causes PPS?
The causes of PPS are not completely understood. However, many researchers believe that PPS symptoms result, at least in part, from the unusual stress placed on surviving nerve cells. During the initial attack of polio, some of the nerve cells in the spinal cord that control muscles (called motor neurons) are damaged or destroyed. Without impulses from these nerve cells, a muscle cannot function. Fortunately, some motor neurons usually survive the polio attack and send out new nerve connections to the orphaned muscle cells in an attempt to take over the function of the nerve cells that were destroyed. This process enables an individual to regain at least some use of affected muscles. However, after many years, the overburdened nerve cells may begin to fail, resulting in new muscle weakness.
Some research suggests that the normal aging process also plays a role. After the age of 60, most people have a decrease in the number of motor neurons in their spinal cords. Persons who have not had polio can lose a lot of motor neurons as they age without experiencing any serious muscle weakness. However, among polio survivors who already have lost a considerable number of motor neurons, this age-related loss may contribute to new muscle weakness. Both overuse and under-use of muscles also may contribute to muscle weakness.
How is PPS diagnosed?
Polio survivors who suspect that they may have PPS should consult their physician, who may refer them to neurologists or other specialists, preferably having experience with post-polio patients. In addition to the neurological examination, doctors often recommend tests, such as imaging studies (computerized tomography and magnetic resonance imaging), to rule out other disorders with similar symptoms. However, there is no definitive test for PPS. Continuing care, if needed, usually is supervised by experts in centers for rehabilitative medicine.
How is PPS treated?
Treatment often can lessen or eliminate some of the symptoms of PPS. Most people with PPS can benefit from some form of exercise. An appropriate, non-fatiguing exercise program designed by a physician or physical therapist knowledgeable about PPS may help improve muscle strength and functioning. Some individuals are able to participate in some forms of aerobic training, while many others may benefit from gentle stretching or yoga. However, PPS patients who are too weak and fatigued from their normal daily activities may be advised to avoid exercise.
Fatigue is best treated with lifestyle changes, including regular rest periods and daytime naps. Individuals with muscle fatigue limited to specific muscle groups should pace themselves carefully, interspersing bouts of physical activity with rest periods over the course of a day. They may want to consider discontinuing unnecessary energy-consuming activities, such as bed-making, and sit instead of stand, whenever possible. Weight loss also may be beneficial. In some cases, changing to a more sedentary job or working fewer hours may be helpful. Assistive devices such as braces, canes, orthotics, and intermittent use of wheelchairs or motorized scooters for long distances can help conserve energy.
There are a number of causes of pain in PPS. In some cases, treatment of other conditions, such as arthritis and tendonitis, will ease symptoms. Muscle overuse is another common cause of pain in PPS patients. Physical therapy and the lifestyle modifications discussed may help ease pain. Use of moist heat, ice and massage also may help. A number of medications also may be prescribed, when necessary, to ease pain.
Individuals with breathing problems should avoid pneumonia as far as possible. They may benefit from night-time breathing assistance, which may help improve sleep and energy levels. Instruction on special swallowing techniques and diet alterations can make eating easier for those with swallowing problems.

Hehehe Corner

It's strange, isn't it? You stand in the middle of a library and go 'Aaaaaaagghhhh!' and everyone just stares at you. But you do the same thing on an airplane, and everyone joins in.

The Wheel Chair Old and New

In these days of technological advancement, mobile phones with digital cameras, global positioning systems, Segway stand-up scooters and the like, has there been any advancement in the design of wheelchairs and scooters? Well, let's see.........

This is one of the first wheelchairs made. A clever (?) adaptation of an ordinary wooden cane backed chair. It had three wheels (one at the back) with solid tires and a piece of wood as a footplate. It must have been a very uncomfortable ride!

Here's another design. Nope! It's not a joke. The inventor is Don Schoendorfer and he used a lawn chair, mountain bike wheels at the back, castors at the front and a tubular chassis that he welded together. It costs less than $50 and it really does work too!

This design is what we are most used to.They come with electric motors as well, but they haven't changed the design for years and years and years........ and years!.

and here's a revolutionary design which really works. One wheel, (what could be simpler?) it is controlled by a gyroscope and doesn't fall over. You just lean forwards or backwards, left or right and it goes wherever you want it to It works on the same principle as a Segway scooter, .. And..... talking of scooters





This design also hasn't changed in years!!! And years and years!

Finally, here's a design that really looks promising!

2 wheels. 1 chair. It really cannotget simpler than that, right? Nope. In the medical gadget world, there's always a better wheelchair and a bunch of Polish design students just took home the grand prize for this 21st century design.

This wheelchair for the 21st Century was designed as an entry for a contest organized by the Technical University of Eindhoven in the Netherlands. The wheelchair is designed to be driven by muscular force and because of a gyroscope mounted underneath the seat, the wheelchair remains vertical despite having only two wheels. The wheelchair has a set of gearings mounted on the wheels, and the frame consists of two flat springs that are connected to a hard gyroscope box and through a liner guide to the seat's hard frame. The seat is connected to the liner guide by a set of clips.

Hehehe Corner

A chicken walks into the library. It goes up to the circulation desk and says: "book, book, book, boooook".

The librarian hands the chicken a book. It tucks it under his wing and runs out. A while later, the chicken runs back in, throws the first book into the return bin and goes back to the librarian saying: "book, book, book, boooook". Again the librarian gives it a book, and the chicken runs out. The librarian shakes her head. Within a few minutes, the chicken is back, returns the book and starts all over again: "book, book, book, boooook". The librarian gives him yet a third book, but this time as the chicken is running out the door, she follows it.

The chicken runs down the street, through the park and down to the riverbank. There, sitting on a lily pad is a big, green frog. The chicken holds up the book and shows it to the frog, saying: "book, book, book, boooook". The frog blinks, and croaks: "read-it, read-it, read-it".

Childhood Polio and Aging

Mayo Clinic researchers have found that years after experiencing childhood polio, most survivors do not experience declines greater than expected in their elderly counterparts, but rather experience only modest increased weakness which may be commensurate with normal aging.

"Other researchers have suggested that polio is a more aggressive condition later in life, but we've actually found it to be relatively benign," says Eric Sorenson, M.D., Mayo Clinic neurologist and lead study researcher. "Our results suggest that polio survivors may not age any differently than those in the normal population - they're not doing too badly compared to their peers. This tells us that the cause for the decline in muscle strength in polio survivors may be aging alone."

Polio is a contagious, viral illness that peaked in the United States in 1952, when 3,000 people died of the disease. Mass immunizations in the mid-1950s began to slow the spread of the disease, and the last case of polio not caused by a vaccine occurred in the United States in 1979. The three major types of polio include spinal polio, a paralytic polio that attacks nerve cells in the spinal cord; bulbar polio, in which the virus attacks motor neurons in the brainstem; and bulbospinal polio, a combination of spinal and bulbar polios. The effects of polio run the gamut from a complete return to normal function to paralysis of limbs to acute death. Following the illness, most patients are worried about their long-term prognoses, according to Dr. Sorenson.

To conduct this study, the researchers randomly selected a group of 50 polio survivors from the general population of Olmsted County, home of Mayo Clinic, and followed them for 15 years. The average age of participants at the study's start was 53, and the patients were an average of 40 years past their childhood experience with polio. The researchers measured strength and loss of neurons at the beginning of this period, and then again five and 15 years later with electrophysiological testing, strength testing and timed tests of performing basic functions. They found modest declines. Each patient also completed questionnaires about symptoms of progressive weakness at the beginning and end of the study period. Though the majority complained of progressive weakness during the time they were studied, these symptoms did not correspond with their actual magnitudes of decline over time. Rather, the researchers found patients' symptoms experienced were associated with the degree of residual weakness immediately following their polio infections.

"Overall, we found that strength changed very little in these polio survivors as they grew older, and we discovered the neurons dropped off at a rate comparable to other non-polio survivors as they aged," says Dr. Sorenson. "We concluded this was normal aging on top of their old deficits. Very few had to change their homes or add adaptive equipment. Those who had weakness problems during our study had a larger deficit at the end of their childhood disease, making them more likely to develop symptoms. So, as deficits at the end of the disease increase, the probability of experiencing post-polio symptoms increases."

The discrepancy between what some of the patients experienced with growing weakness and their actual measurements of strength and neuronal loss likely is due to increased sensitivity due to their disease experiences, according to Dr. Sorenson.

"Patients feel their weakness progressing, but when you measure it, it's very modest," he says. "Likely, they lost so much strength at the time of their illness that any change is very noticeable to them. Though the likelihood is high that patients who have had childhood polio will complain of weakness later in life, they can expect years of stability without the need for major lifestyle modifications."

My Feet are Blue!

The process that causes "Polio Feet" to turn blue and cold and become difficult to move when it's only cool is the same process that caused paralysis after the original polio.

The Polio virus got into the spinal chord and either destroyed or damaged the anterior horn cell motor neurons that transmit the message to move from the brain to a muscle. When those neurons were damaged, or especially when they died, they disintegrated and the muscle fibers that used to be turned on by those cells no longer were.

There is another kind of motor neuron that was affected by the virus - the motor nerve that controls the muscle around your blood vessels. When these muscles died, there were no motor nerves to tell the blood vessel to contract; if the blood vessel cannot contract, blood 'pools,' especially in the veins. When the blood pools in the veins, it is going to be blue, because venous blood is not oxygenated.

Polio feet are caused by warm blood that should be in the center of your body, flowing out into the hands, arms, and especially the legs (since gravity is pulling the blood down). The warm blood pools in the surface of your skin, and because the blood vessels cannot contract, the result is "polio feet." The venous pooling causes your blood to radiate heat into the environment. People who had polio keep the world warm, unfortunately at their own expense. The price of this is a thorough cooling of the limbs and all tissues of the limbs.

When heat leaves the veins, the motor nerves that lie near the surface of the skin start to cool. The muscles that lie just a bit below the surface starts to cool also. The connective tissue that connects muscle to muscle, and muscle to bone starts to cool and stops being elastic so it is harder for it to move.

When the motor nerves aren't functioning well, the muscles aren't going to function well; if the muscles don't function well, there is going to be muscle weakness. We think that muscle weakness and the loss of body heat are causing fatigue; and we think that people who lose all their body heat into the environment are burning calories to maintain their body temperature, so there are fewer calories to keep moving.

People who had polio should dress as if it is 20 degrees Fahrenheit colder than it actually is, but you should dress in layers so you can control your body temperature and not pass out from a rapid flow of blood away from your head as your arteries warm.

The bottom line is to keep warm, and stay cool!

Hehehe Corner

You have to stay in shape. My grandmother started walking five miles a day when she was 60. She's 97 today and we don't know where the hell she is. Ellen DeGeneris

Exercise and Activity

Exercise has been the most hotly debated area in PPS. Really speaking, there are only two rules......

Listen to your body! If you are doing things that cause fatigue, weakness or pain, stop doing them!!! You need to pace your activities. You need to work and then rest about twice the amount that you worked. You can actually do 240% more work if pace yourself. In other words, you don't drive your car until it's out of gas, so you shouldn't drive yourself to exhaustion, weakness or pain.

Do only non-fatiguing exercises that have been shown not to hurt. Learn to pace yourself and conserve energy! Do only gentle exercise after you get a new brace or after surgery, to keep muscle tone. The key word is non-fatiguing. Pacing yourself and resting doesn't mean sitting or sleeping all day and not moving. You should be doing what you need to do for yourself, and at your job, but in a paced, energy conserving fashion.

What Treatment Helps a PPS'er?

Here's a rating given by a large cross-section of Polio Survivors who developed PPS., of helpfulness of some treatments which might (or might not) relieve PPS symptoms.......

Treatment Ratings of Treatment
Very Helpful No Help
at all
Massage 67% 0%
Hot baths 59% 2%
Special shoes 55% 5%
Swimming 47% 18%
Hydrotherapy 43% 22%
Counseling 36% 1%
Yoga 33% 11%
Drugs for pain relief 33% 4%
Dietary changes 30% 7%
Water aerobics 29% 14%
Stress management course 28% 17%
Exerise program (See above!!!) 25% 31%
Vitamins 25% 10%
Relaxation course 23% 12%
Herbal remedies 19% 14%

 

Be Wise to Your PPS

Diet pills are dangerous. Protein diets are dangerous. Be very careful.

Seek out a knowledgeable doctor. A multivitamin might be advisable, if you can tolerate it. Megavitamins can be a problem and ought to only be attempted under a doctor's care. Some studies with vitamin B-6 have proven that mega doses of this vitamin can help certain rare disorders, but people who self treat with mega doses of B-6 risk severe nerve damage. Be cautious. Excesses of water soluble vitamins are also excreted from the body and sometimes only create a placebo effect.

Vitamins are either water soluble (8 B vitamins and C) or fat soluble (vitamins A, D, E, and K). Since the fat soluble are stored in the body, they can build up to toxic levels. The water soluble vitamins are not generally stored and the excess are washed out of the body through urine or sweat. They need to be replaced daily.

Be aware of the salt you use in and on your foods. Salt is a combination of sodium and chloride (NaCl). Sodium (Na) occurs naturally in foods. However, in natural unprocessed foods, sodium is low and phosphorus is high. In processed foods, they are generally high in sodium (or even salt) and low in phosphorus.

Try to eat foods in as close to their natural state as possible. Fresh fruits and vegetables (high in fiber), grains like oatmeal instead of processed sugar (or honey) laden foods. Read labels: for cereals, look under Total Carbohydrates in Nutrition Facts, the Sugars should be from 0 g (grams) to not more than 6 g. Also, change to lower fat (or low fat) dairy products. You can save many fat calories by switching to a lower fat milk If you drink whole milk switch to 2%, if you are drinking 2% try 1%, etc. You still get all the calcium and added vitamin A and D in low fat.Raw meats and raw fish as a natural food are not good. Trim the visible fat, take the skin off the chicken and bake, don't fry whenever possible. Avoid the Colonel and all his chicken!

Vegetarianism may prove to be beneficial to some people. Just remember that you need to include other sources of protein if you eliminate meats entirely. Vegetarians can get protein if they eat dairy or eggs. If not, protein is found in nuts and nut butters, beans and vegetables. There are web sites for vegetarian foods that are worth checking out.

I am not trying to add to the "well, what can we eat now?" syndrome. If your eating habits are terrible, just try to change a little at a time. If fresh fruit is too expensive (but look for bargains) buy canned. Read all labels. Enjoy treats even if you are eating well. I like cookies, but generally my wife bakes her own or we buy low fat as treats (Yvonne's are much better.).

Use medications that work for you, but only try one at a time to see its effects. Use the lowest dosage that works. Be careful with drug interactions. Drugs have side effects depending on the person. The question is: do the benefits outweigh the risks? Like nausea, does it go away? You decide if it is working for you.

Hehehe Corner

The scene was Mount Olympus, where Bacchus, the Greek god of wine, had thrown a party for a pair of visiting Roman deities Ceres, the goddess of agriculture, and Janus, the two-faced god of gates, doors and beginnings. Everyone overdid it, more or less. Ceres at one point was staggering and whirling around in circles; Janus, equally submerged, was trying to dance with her. Bacchus feared that the pair might fall over, so he went to steady them.

This marked the first time that a whirled Ceres was held with a double-header.

One Sunday Afternoon

One Sunday afternoon some of the neighborhood boys are playing baseball, and Cody, a boy with a severe disability, is watching the game, holding his father's hand. Suddenly, Cody says "I wanna play too!"

His father knows that because of Cody's physical limitations, the boys wouldn't want him on the team, but knowing how much it means to Cody, the father approaches one of the boys and asks, "Do you think that my boy could get into the game?" The boy hesitates, then, realizing that his team is trailing by six runs in the eighth innings, decides that nothing that Cody does is going to make any difference at all, so he nods his head in agreement. Cody is given a glove and goes to stand in centre field.

Cody's team stages a small rally at the bottom of the eighth but at the ninth, they are still trailing by three runs. At the bottom of the ninth, Cody's team have two players out, the bases are loaded, and the next scheduled batter is... ... ... Cody!

Will his team mates actually let Cody take his turn with the bat? Either way, their chance to win the game is lost. Cody is handed a bat and shown his way to the Plate. Cody doesn't even know how to hold the bat. Seeing how hard it is going to be for Cody to hit the ball, the opposing Pitcher moves in several steps and lobs the ball gently towards the Plate. Cody swings clumsily and misses. Strike one!

Before the next pitch, one of Cody's team mates goes to the Plate and shows Cody how to hold and swing the bat. The Pitcher steps even closer and lobs another feeble pitch. This time, Cody makes weak contact, hitting a slow ground ball to the Pitcher. The Pitcher picks up the ball and looks at it, knowing that he can easily throw Cody out at first base and end the game right there. Instead, he throws the ball all the way over the first base man and into right field. Everyone starts yelling "Cody!! Run to first base! Run to First!" Never in his life has Cody ever run to First. By the time the right fielder tracks the ball down, Cody is standing on First Base with an excited startled look on his face. The right fielder understands the Pitcher's intentions, so he throws the ball all the way over to Third Base, and now everybody yells "Cody!! Run to Second!! Run to Second!!" Cody hesitates and then runs as fast as he can to Second Base, and the player on Third runs Home and scores a run. As Cody reaches Second Base, the opposing Shortstop runs toward him, turns him around in the direction of Third Base and yells "Cody! Run to Third!!" Cody rounds Third. All eighteen boys of both teams are running behind him screaming "Cody!! Run Home! Run Home!" Cody crosses Home Plate and his team lift him onto their shoulders in celebration. Cody has hit a grand slam and won the game!

After watching the whole thing, Cody's father says to himself, "I know that everyone is supposed to be born perfect, but where is the perfection in Cody? His body is so severely twisted that there cannot possibly be any perfection in him." But, soon, Cody's father realizes that he can indeed see Cody's greatness. When a child like Cody is brought into this world, perfection comes in the way that people react to this child. Today, because of Cody, those 18 boys have reached perfection.