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A SHANA TOVAH (HAPPY NEW YEAR),
and A CANDY FILLED HOLLOWEEN
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September 22nd -- Dr. George Lindenfeld, director of the Daytona Biofeedback
Center will tell us about biofeedback, stress management, and
short term memory loss.
November 18th -- Monica Evans of Haigh-Black Funeral Services will discuss
DNA Preservation and Pre-Need or Not to Pre-Need,
What is the Answer??
January 19th, 2003 -- NEW YEAR’S LUNCHEON
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It is our hope that everyone has had a GREAT summer. It’s now time to have our first meeting heading into our tenth year. Unbelievable as it may sound, we will celebrate our tenth anniversary at our May 2003 meeting. If you have any ideas of what we should do to celebrate, please let us know.
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PLEASE NOTE CHANGE OF MEETING DATE:- Due to the Jewish Holy Day of Yom Kippur falling out on the evening of the third Sunday (our normal meeting time), September 15th, we have changed our meeting to the following Sunday, September 22nd. We will be meeting at the Red Lobster on I-92 (Intl Speedway Blvd), as we have been the last few meetings.
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Reprinted from Rancho Los Amigos Post-Polio Support Group, August 2002 with special update by Mary Clarke Atwood for our newsletter.
Polio Above the Neck
With Susan Perlman, M.D.
Reported by Mary Clarke Atwood
Rancho Los Amigos Post-Polio Support Group Newsletter
April 2000 updated June 25, 2002
This report is based upon Neurologist Susan Perlman’s talk to the Post-Polio Support Group of Orange County, CA in May 1999. Dr. Perlman is Associate Clinical Professor of Neurology at the University of California-Los Angeles (UCLA) and Director of the Neurogenetics Clinic. Her Post-Polio Clinic is currently on hiatus.
Previously much attention has been given to post-polio problems involving the limbs – a weak leg, fatiguing arms, etc. These manifestations of Post-Polio Syndrome (PPS) occur in people who had spinal poliomyelitis - the acute infection that affected anterior horn cells in the spinal cord segmentally.
People who had nonparalytic polio, by definition had polioencephalitis. They had involvement of those brain areas above the spinal cord, and could well have had poliovirus changes in the brainstem (bulbar polio). So breathing and swallowing problems may be present even in people who ostensibly had nonparalytic polio and also in others who may have no complaints about their legs or arms.
This report focuses on the problems of bulbar polio and other problems that are now manifested in people who have PPS. The cause of these problems is polio damage that occurred in the upper cervical spine and upward. Bulbar is defined as polio involvement of the motor nerves in the brainstem.
Polio autopsy reports following the epidemics of the 1940s and 1950s showed signs of acute polio infection throughout the body; it was not just restricted to the spinal cord. There were changes found in upper motor neuron pathways and there were changes found in central brain structures that control alertness, central fatigue, and autonomic functions such as temperature regulation, etc. There were also many changes seen in the brainstem itself.
Probably greater than 90% of a polio survivor’s motor neurons were somehow affected during the acute stage and had some damage, even if not paralytic. Autopsy studies have shown that during the acute attack as few as 3 or 4% of the motor neurons remained intact.
There are not many polio survivors seen now who had severe residual effects from the acute bulbar polio infection. This is probably because when there is a 50% loss of the motor neurons that control breathing or swallowing, a person is going to be in serious trouble. Many did not survive the acute infection. Those who survived bulbar polio truly are survivors, said Dr. Perlman.
There are some people who had only mild breathing weakness with the original polio, (chest wall weakness or a little diaphragmatic weakness) but their breathing centers in the brainstem were actually intact. People who had true bulbar polio had involvement that didn’t trigger breathing - they needed to be assisted until those centers came back. So when looking at post-polio breathing problems, people who had primary muscular manifestations should be included along with those who had bulbar polio.
In other parts of the body such as arms and legs, surviving motor neurons remodeled and adopted the injured or orphaned ones in order to take over function. However this was not as common in the brain and brainstem. Since the brainstem has less plasticity and flexibility, it was harder for remodeling to occur to the nerves of the pharyngeal muscles and to those of the upper part of the esophagus. For years, many survivors have been using compensatory strategies, such as swallowing on the other side of their throat. Those who had residual problems such as vocal cord paralysis may also have been able to compensate for this. But when the muscles on the “good” side of their throat begin to weaken, they become aware of a “new” problem in that area.
Muscles that control breathing and swallowing are the same groups of muscles that are involved with speech, to some extent. These groups of muscles are located in the throat. So people with PPS who are having problems with swallowing, breathing, or shortness of breath during activities of daily living, might also complain of speech problems. Although facial, jaw, and throat muscles are controlled in the brain stem, they have rarely been thought of in connection with polio.
Are people who had bulbar polio going to be having increasing bulbar dysfunction?
The following criteria are used to determine increasing bulbar problems:
1. Severity of residual disability
2. Residual bulbar or respiratory signs
3. Later age at onset of acute polio (past age 10)
4. (Possibly) recent falls or injuries; or surgical procedures in the pharyngeal area; or weight gain, because it puts more pressure on the diaphragm and pharyngeal area.
Fortunately our bodies have several safety factors to assure that breathing muscles meet our oxygen and carbon dioxide demands. The primary muscle for breathing is the diaphragm and the secondary breathing muscles are the external intercostals (the muscles between the ribs). So if a person has a fatigable diaphragm that tires out by the end of the day, the intercostals will kick in and the person will begin breathing from the chest. There are also accessory respiratory muscles that help lift the chest from the shoulders.
With post-polio breathing problems, part of the problem is going to be muscular. There may be a diaphragm or secondary assistive muscles not kicking in as well as they should. There can also be central (brain) changes contributing to this, such as decreased respiratory drive, if those centers were affected originally. There may be changes in the chemo-receptors: perhaps the sensors are not sensing carbon dioxide (CO2) buildup as sensitively as before.
Scoliosis can also cause restriction of breathing. A person who has a scoliotic spine cannot expand his chest as well so he underbreathes because of it. If scoliosis is getting worse as a post-polio symptom, it’s going to make that aspect worse and will interfere with breathing.
When doctors are looking at respiratory problems of PPS patients, they should look at not only peripheral problems and muscular problems, but also central disregulation of breathing as well. All these factors are addressed at the UCLA sleep lab, directed by Dr. Frisca Yan-Go.
Dr. Perlman cited a report (“Epidemiology of the Post-Polio Syndrome” by J. Ramlow, et al. American Journal of Epidemiology, October 1, 1992) that involved 77 subjects with nonparalytic polio and 474 subjects with paralytic polio. A change in breathing was observed in 10% of the nonparalytic subjects and in 12% of the paralytic ones. Swallowing problems were noted in 6% of the nonparalytic subjects and in 7% of the paralytic ones.
In the larger ongoing studies at polio centers such as Mayo Clinic, Rancho Los Amigos, and centers in Canada, possibly as many as 40% of the people with PPS are having new respiratory complaints. (About 80% of PPS patients complain about fatigue.)
Another study of 74 polio survivors who were having shortness of breath found two good measuring devices for patients with increasing respiratory problems:
1. Forced expiration (a pulmonary function test) can be a very helpful monitor. This test shows how hard it is for a person with PPS to breathe out and it requires the use of some of the intercostal muscles and the abdominal muscles. Dr. Perlman recommends this test every year or so for her patients who have significant breathing complaints.
2. Monitoring CO2 levels in the blood is another good measuring device. The question is not, how much oxygen is a person inhaling? But, how much CO2 is a person retaining? Is a patient not breathing fast enough? Is the person fatiguing so that he cannot ventilate? It is the amount of ventilation a person gets that clears the CO2. So if you are ventilating less efficiently, your CO2 levels are going to go up slowly.
For patients at risk, these researchers felt that anything that was in danger of happening could be detected by measuring maximum expiratory pressure and carbon dioxide levels on a regular basis.
Swedish research on cardio-respiratory parameters in PPS patients found a significant incidence of deconditioning. This goes back to the old thought that everybody should be doing some exercise. Dr. Perlman says doctors are no longer saying people with PPS should do no exercise; some exercise, conditioning or aerobic exercise, is important. Survivors can improve heart function, circulation, and breathing to some extent by doing something that increases the heart rate. These researchers suggested increasing the heart rate to 70% of maximum by using a pool or other equipment. They felt these were tolerable levels for their PPS patients.
Researchers in Toronto looked at 3 areas of muscles, (respiratory, diaphragm, chest wall), bulbar symptoms, the control rate, and scoliosis. They found that the control panel in the brainstem was the least important of the group. These people were having problems because of the diaphragm, chest wall fatigue, or due to progressing scoliosis.
A few of Dr. Perlman’s patients have experienced increased breathing problems at higher altitudes. Adjust-ments can be made so those patients can travel at higher altitudes and not feel short of breath all the time.
The motor neurons that control swallowing are located in the brainstem. In order to have an effective swallow, groups of muscles are used to insure that the food is chewed, forms into a bolus, and goes down properly. The swallowing center coordinates other activities related to swallowing: chewing, licking, gagging, coughing, sneezing, vomiting, belching, and breathing to some extent (when a person is swallowing, he doesn’t breathe). It is hard to eat or swallow at the same time as breathing, because the two groups of muscles and nerves are competing against each other.
There are at least a dozen places in the body where a post-polio patient who had some pharyngeal problems or brainstem related swallowing problems could begin to have trouble now with swallowing – either in the steps or in the sequence of swallowing. For example, people who have weakness in the jaw muscle as a complication of PPS will find it hard to chew when fatigued. Or people who have a weak soft palette will find that food is slipping into their throat before it is fully chewed and food or drink - drink especially - may be coming out their nose.
Swallowing problems have been identified in recent studies. However it is rare to see a PPS patient who is having constant choking. Most people can think about it and use their conscious mind to control what is going on, thereby preventing swallowing problems from occurring. Any part of the gastro-intestinal tract - from the mouth all the way to the bottom - could be slowed, weakened, or not working properly due to PPS. But don’t assume that every symptom a polio survivor gets is due to PPS.
Although common pathways are used for breathing and swallowing, not everyone who has swallowing problems has breathing problems and not everyone who has breathing problems has swallowing problems. Bulbar muscles can slowly dysfunction and there can be silent swallowing problems. In a 1991 swallowing study by Dalakas he concluded “…in bulbar neurons there is a slowly progressive deterioration similar to that in the muscles of the limbs.”
Can variable pulse rate be made worse, not because of heart disease, but because of post-polio symptoms affecting the area?
The average internist may be hard pressed to believe it possible for polio to be related to current blood pressure or pulse rate problems. However, vaso-motor centers that control blood pressure and pulse rate are located in the medulla (in the lower brainstem) and also in the autonomic area of the brain. Since polio damage has been seen in the brain and in the brainstem, this is an area that needs further study.
As we understand what was involved in acute polio and the amount of brain that was involved, recovered motor neurons that might have looked quite complete on the surface could actually be functioning on very shaky ground. “The majority of motor neurons, in whatever region the poliovirus got to, were probably affected in some way or another”, said Dr. Perlman.
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The following poem was written by an old woman living in a nursing home in England. It was found among her things when she died. It could just have well been written by a man.
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What do you see, nurses? What do you see?
What are you thinking when you look at me?
A crabby old woman, not very wise,
Uncertain of habit, with far away eyes,
Who dribbles her food and makes no reply
When you say in a loud voice “I do wish you’d try.”
Who seems not to notice, The things that you do,
And forever is losing a sock or a shoe.
Who unresisting or not, lets you do as you will,
With bathing and feeding, the long day to fill.
Is that what you think, is that what you see?
Open your eyes, nurse, you’re not looking at me.
I’ll tell you who I am, as I sit here so still,
As I use at your bidding, and eat at your will,
I’m a small child of ten, with a father and mother,
Brothers and sisters who loved one another,
A young girl of 16, with wings on her feet,
Dreaming that soon now a lover she’ll meet.
A bride soon at 20, my heart gave a leap.
Remembering the vows that I promised to keep.
At 25 now, I have young of my own,
Who need me to build a secure, happy home.
A woman of 30, my young now grow so fast,
Bound to each other with ties that should last.
At 40, my young sons have grown and are gone,
But my man’s beside me to see I don’t mourn.
At 50 once more, babies play round my knee,
Again we know children, my loved one and me.
Dark days are upon me, my husband is dead.
I look at the future and shudder with dread.
For my young are all rearing young of their own,
And I think of the years and the love that I’ve known,
I’m an old woman now and nature is cruel,
Tis her jest to make old age look like a fool.
The body, it crumbles, grace and vigor depart.
There is now a stone where I once had a heart.
But inside this old carcass a young girl still dwells,
And now and again, my battered heart swells,
I remember the joys and I remember the pain,
And I’m living and loving life over again,
I think of the years all too few – gone too fast,
And accept the stark fact that nothing can last.
Open your eyes, nurse open and see.
Not an empty old woman, look closer – see ME.
~ ~Author Unknown~ ~
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Reprinted Easter Seals Southern Colorado Post-Polio News, April 2002
DON’T SURRENDER YOUR DIGNITY
by Charles Inlander
People’s Medical Society
Get the respect you Deserve in the Hospital
“A hospital stay should be a time of healing. But all too often the experience erodes a patient’s personal dignity. Here’s how to ensure that your needs are met and your dignity stays intact during hospitalization….
*Ask about everything. Let your doctors and nurses know that you plan to play a major role in your care. Inquire about your treatments and prognosis. Don’t worry that your doctor will think you lack confidence in him/her, or that asking questions will cause resentment among the hospital staff, producing worse care.
“Hospital patients who ask questions receive better and more respectful treatment, studies have shown. Questions encourage the medical staff to pay more attention to you.
“If medical personnel use jargon (language you don’t understand) ask them to explain it. Always inquire about the medication you are given. If you receive a new drug, ask” Why is this different from what I was getting before? Who ordered it?
“Asking questions also helps prevent medical mistakes. Nearly 100,000 hospital patients die every year from medical errors, such as wrong medications and botched surgery.
*Know who is treating you. Hospital staffing levels have been drastically reduced. A person in a white uniform is not necessarily a doctor or nurse. In fact, it may be someone with almost no training, such as an orderly.
“If someone comes into your room to perform a procedure – and you don’t know who that person is – ask: Who are you? What do you do here? Are you a licensed practical nurse (LPN) or registered nurse (RN)?
“If you are concerned that the person is not fully trained in the procedure, refuse it. You’ll be surprised at how quickly you receive treatment from a nurse.
*Don’t be shy about seeking help. If no one responds to your call button within a few minutes, pick up the phone. Call the hospital operator and ask to be connected to the nursing station on your floor. When the phone is answered, say you need help in your room immediately.
“Important: If you have a complaint, you have the right to response in a reasonable period of time. If you’re not getting one, ask to see the hospital’s ‘patient representative’ or ‘ombudsman,’ who mediates between staff and patients. See what the representative can do to resolve your situation.
“If there is no patient representative or the representative is not helpful, ask to see the medical director or the hospital administrator.
*Have someone with you at all times. If you are seriously ill or under-going surgery, you probably won’t have the energy or mobility to protect your rights. So have someone with you 24 hours a day. Enlist family and friends, and work out a schedule. As long as your ‘advocate’ is not interfering with the delivery of care, he/she has a right to be there.
*Talk to the staff about a schedule that fits your needs. A shift change may be the only reason a nurse is taking your blood pressure at midnight. If that’s the case, tell your doctor or the head nurse that you’d prefer not to be awakened at night.
*Make sure the food is appetizing. Notify the hospital dietitian if fresh fruits and vegetables aren’t served, the food doesn’t arrive hot, the meals are served at unusual times for the convenience of the staff, or you lack sufficient time to eat.
“Better: Have visitors bring food to supplement hospital meals. Make sure they are aware of any special dietary restrictions you have. Tell the doctor or nurse that this is what you intend to do.
*Know your rights. You have a right to say no to any medical procedure. You have the right to see your medical records. You have the right to check yourself out at any time, even against the advice of hospital personnel. You have the right to fire your doctor. You have the right not to be treated by a medical student, if you so choose.”
(Reprinted from Bottom Line Health Newsletter)
FECPPSG Editor’s Note:- When it comes to hospital food, it is well-known that it is usually mediocre. The suggestion to talk to the dietitian/ nutritionist is a good idea. They are normally very willing to give you foods you request (within reason – forget about filet mignon and lobster). Having visitors bring you “goodies” is a good idea – try to have them bring items that are not perishable, although nursing staff will put items into refrigerators if there is room for them.
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Did you know that Florida has a Patient’s Bill of Rights??? To reinforce the above article, we have printed it here.
PATIENT’S HOSPITAL BILL OF RIGHTS
and RESPONSIBILITIES
■ To be treated with courtesy and respect, with appreciation of his or her dignity, and with protection of a need for privacy.
■ To a prompt and reasonable response to questions and requests.
■ To know who is providing medical services and is responsible for his or her care.
■ To know what patient support services are available.
■ To know what conduct rules and regulations apply.
■ To be given by the health care provider information such as diagnosis, planned
course of treatment, alternatives, risks, and prognosis.
■ To refuse any treatment, except as otherwise provided by law.
■ To be given full information and necessary counseling on the availability of known financial resources for care.
■ To know, if eligible for Medicare, whether the health care provider or facility accepts the Medicare assignment rate.
■ To receive prior to treatment, a reasonable estimate of charges for medical care.
■ To receive a copy of an understandable itemized bill and to have the charges explained.
■ To impartial access to medical treatment or accommodations.
■ To treatment for any emergency medical condition that will deteriorate from failure to provide treatment.
■ To know if medical treatment is for purposes of experimental research and to give his or her consent or refusal to participate in such research.
■ To express grievances regarding any violation of his or her rights.
A patient is responsible:-
■ For providing to the health care provider accurate information about present complaints, past illnesses, hospitalizations, medications, etc.
■ For reporting unexpected changes in his or her condition to the health care provider.
■ For reporting to the health care provider whether he or she understands a contemplated course of action and what is expected of him or her.
■ For following the treatment plan recommended by the health care provider.
■ For keeping appointments and, when unable to do so, for notifying the health care provider or facility.
■ For actions if treatment is refused or does not follow the health care provider’s instructions.
■ For ensuring that the financial obligations are fulfilled.
■ For following health care facility conduct rules and regulations.
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POST-POLIO PAIN:
CAUSES AND MANAGEMENT
Carol Vandenakker, M.D.
Director, Post-Polio Clinic
Dept. of Physical Medicine & Rehabilitation
University of California, Davis, Health System
Lawrence Ambulatory Care Center
4860 “Y” Street, Suite 1700
Sacramento, CA 95817
(916) 734-7041
May 18, 2002 presentation
to San Francisco Bay Area Polio Survivors meeting
[Transcribed and edited by Phyllis Hartke, SFBAPS Pres.]
Introduction: This presentation may not cover every type of pain you may experience. A polio survivor can have other kinds of pain associated with other medical conditions that don’t have anything to do with polio, as you all are aware. As far as the things that seem to be related to the fact you had polio (the changes in muscle and body mechanics and the pain syndromes that are the result of that), that’s what we are going to cover today.
Symptoms of Post-Polio Syndrome
As you all know, pain is one of the three major symptoms of PPS - the classic triad of fatigue, new weakness, and then pain in either muscles or joints. You don’t even have to have the “PPS” as far as the whole blown syndrome to be experiencing pain related to polio. Obviously, as a physician, one of my goals if you are complaining of pain is to work on decreasing and managing that pain because that will subsequently increase your comfort level, your functional level and overall quality of life.
A. Causes of Pain in the Polio Survivor
There are a number of different causes of pain. I broke these up into four different categories: post-polio muscle pain; the different soft tissue or overuse syndrome type of pain; biomechanical or pain due to degenerative changes; and, bone pain. We are going to start with the post-polio muscle pain.
1. Post-Polio Muscle Pain:
Pain in polio-affected muscles
This is the pain people experience in the muscle tissue itself. It is most-commonly in polio-affected muscles. If you are experiencing this type of pain in a muscle that was not polio-affected, there’s a good chance that muscle actually was polio-affected but to a lesser extent and you may not have been aware of it. In a lot of people as they get older, we note some subtle weaknesses in muscles that you always thought were normal but in fact were not completely normal.
Deep or superficial
The pain may be experienced as either a very deep pain deep in the limb or a more superficial sensation.
May be similar to pain of acute polio
A lot of patients will describe it (pain) to be very much like the pain they had with acute polio, if they remember that. Of course, people that had it (polio) as infants don’t really recall that; but, the ones that had it a little bit older remember the pain associated with the acute polio infection.
Associated with muscle cramps, twitching, or crawling sensation
Along with the muscle pain, there is also muscle cramping or twitching or a sort of crawling sensation where the muscle seems to be doing things that you can’t control.
Often increased at night or end of day
Often people experience this at rest, not while they are doing something but later in the day or at night, especially when they get into bed. Then they start feeling all those muscles they’ve been stressing.
Exacerbated by physical activity, stress, and cold
These symptoms are definitely aggravated by physical activity, specifically excess physical activity, and also are increased with stress and cold.
Caused by overuse/excess stress on weak muscles resulting in tissue damage
2. Overuse syndromes and soft tissue pain
Caused by injury or inflammation of soft tissues: muscles, tendons, bursa, and ligaments
This pain is what happens to a weak muscle when you are stretching it beyond its capability of strength or endurance. Most of the time it’s endurance and not strength we’re talking about. A weak muscle can often give, one time, a pretty good contraction or at least an anti-gravity contraction. But if you try to do that repetitively, you don’t have the endurance there for that muscle to keep firing and keep doing an activity.
Even a muscle that’s just a little bit weak can be overused if you’re doing an activity that involves a lot of repetition movement. For most people that ends up being just that you’ve gone somewhere and ended up having to walk a lot farther than you normally do or had planned to do. And then later on you notice the weak legs and the muscles are really acting up.
This is what happens when you overuse the muscle, and this goes for all muscles - normal and those affected by polio that have lost some of the muscle fibers -- but anytime you stress a muscle what happens is you damage some of the muscle fiber.
That’s actually the concept behind strengthening exercise when you see these body builders and weight lifters working on building muscle. What they do is actually work the muscle to the point that there is some damage to the tissue and then the muscle, as it heals, hypertrophies and enlarges, and you actually can kill tissue.
But if you have a muscle that you’re overusing and really stressing all the time, your body may not have the chance to do that rebuilding in between. Especially in a polio-affected muscle it takes longer to do that rebuilding process. So if you have a little bit of muscle damage, if you don’t get that muscle wrapped for two, three, four days afterwards and go out and then do the same activity the next day or two days later you may just tear down the muscle further and become weaker.
Early on before post-polio syndrome was really recognized that happened to a lot of polio survivors. And to be honest, it still happens now when polio survivors are sent to physical therapists that don’t know anything about polio. The therapists do the traditional “ok, let’s try to strengthen that weak muscle, let’s do lots of reps, lets stress it.” But they are overstressing, so instead of seeing strength gains as you would see in a normal muscle, you’re tearing down the muscle and you have a lot of tissue damage.
And that’s a big part of what causes that pain when you’re later on resting and you realize “Hey, I really overdid it and this muscle is now very painful.” That’s a symptom you all need to be aware of, even if it is not especially painful. Even if you are getting only a little bit of cramping, twitching, crawling sensation at night in certain muscles that means you’ve been overusing the muscle that day or possibly the day before. It’s a sign to you to think back, “ok, what did I do involving this muscle and how can I change that or cut back a little bit so that I’m not getting these symptoms later on.” It’s a good thing to learn to know so that you can listen to your body as far as what for you is too much.
Those random sorts of jerks that occur when you first relax, that’s a nerve impulse that causes that. That’s not what I am referring to. I am referring to where it’s more continual and the muscle is actually kind of fluttering.
Moving on to the soft tissues other than muscle in the muscular skeletal system. The muscles are connected to bones by tendons. The bones are held together by ligaments. There’s bursas or sacks of fluids around all your joints. All of these are part of the soft tissues of the body. In somebody who has polio these soft tissues are also very much at risk of having injuries.
Strains, sprains, tendonitis, bursitis, myofascial pain
The body is really amazingly designed as far as the whole anatomy and how it functions. If you have one muscle that’s weak or a group of muscles that are weak, then the area of the body or the limb, the whole biomechanics of that limb change. Often you use substitution to do certain movements. Often a joint has more pressure or tension on one side than another because one muscle may be strong and the opposing one may be weak.
The normal biomechanics of different joints can be significantly altered and this leads to a real propensity to having different types of sprains which are stretching or tearing of ligaments, strains which are injuries to muscles. That, of course, can even happen to a good muscle because the muscle imbalances.
It is very common to see bursitis or inflammation around joints, again because of altered mechanics. I know for a lot of people who have scoliosis that you may not connect this right away. A lot of polio survivors do end up with scoliosis if they have trunk weakness. It affects the position of the pelvis. The pelvis will be rotated and twisted, and that translates into different degrees of stress in the hips.
A lot of people with scoliosis develop bursitis around the hip because now the hips aren’t really balanced; one may be turned in a little bit. It may be very subtle but over time inflammation around weak joints develop.
In addition, you can have myofascial pain, which is chronic pain in a muscle where there’s a degree of muscle spasm, which is that muscle trying to do more than its able to. You get trigger points and have a constant tightness and pain in certain muscles, which is different from pain that occurs after overuse.
If you are using crutches to ambulate or have a medial tear, you might develop overuse syndromes or tendonitis in the upper extremities, not from the altered mechanics so much, but from the repetitive use.
These are the sorts of things we see in the general population with overuse, but you are at a special risk if you are, say, using your upper extremities a lot for mobility. The upper extremities really weren’t designed to take all your weight the lower extremities were, so over time people often develop tendonitis in the shoulders, specifically the rotator cuff. Often if those are chronic they end up being tendon tears.
You can get inflammation around the elbow from using grip and having to use both the wrist extensors and flexors all the time. You get inflammation where those muscles connect at the elbow. You can get tendonitises around the hand as well as around the thumb. It is an area that often gets over stressed, and you start to get a lot of pain in that area.
Often affects strong limb
Related to body mechanics, positioning, posture
Worsens with time if not treated
These kinds of chronic inflammations in the soft tissue tend to get worse over time. They often start out as just a minor bothersome little “my shoulder’s kind of bothering me.” If you keep doing what you’ve been doing and continue with the overuse or the overstrain to that area, that inflammation will get worse over time.
May lead to more serious tissue injury
This often leads to a more serious condition where there’s either tearing of the tendon because it’s been inflamed and weakened for so long, or subsequent degeneration to the actual joint itself and destruction of cartilage.
These are things to certainly pay attention to, and pay attention to early even though most of us reason “oh, as I get older I’m going to have more aches and pains”. The more you know about why you are having those aches and pains and which one of them can be corrected or reversed and treated early, the better it is for you.
It is much easier to control these aches and pains earlier than when you get to a point that it’s been a chronic thing and you’ve torn a tendon. It may not be repairable at that point, and then we have to really change a lot of how you are doing things. In addition, we want to get into the degenerative changes that subsequently occur.
3. Biomechanical/degenerative disease pain
Changes in normal joints due to wear and tear
Those soft tissue symptoms are usually the earlier symptoms you see, and then over time with wear and tear on joints there develops biomechanical degener-ative disease conditions. This can be just the normal wear and tear on joints.
Excess stress of joints due to altered body mechanics
For example, if you have one strong leg and one weak one, you tend to favor that strong one all the time. Whenever you’re standing, you’re standing on that strong one. Whenever you are going upstairs, you’re leading with that strong one. Well that strong leg is getting basically twice as much work out as I put on my leg. So, if I was going to get arthritis at 70, you might be developing it at 50 just from that daily wear and tear on the joint.
Stretching/tearing of ligaments
In addition, if any of the joints aren’t balanced and protected the way they were designed to be by the muscles that surround them, there’s going to be abnormal stresses to the joints. Often you then see degeneration in part of a joint. For example, if you have a knee that bends back and you rely on that for stability in the leg, over time you are going to get degeneration in the front of the knee where those bones are pressing together more than what they normally should. And the ligaments in the back of the knee start to stretch so you’re extending further and further back and pretty soon the front of that knee is losing all the cartilage and you’re starting to get pain.
Joint deformity
I saw an extreme example of this in Miami where I saw a gentleman, big muscular guy with very weak legs. He had worked as a boat mechanic for years. Never wore braces, just used crutches, because he could back bend his leg and maintain stability. He could back bend his weaker leg 90 degrees backward. It’s amazing the things that can happen over time with stretching the joints day after day after day. These joint deformities, certainly at some point, start to cause pain. Most people will experience it well before that degree of deformity.
Degeneration in spine-disks, joints and increased curvature
With the deformity in joints, not only do you get the arthritis and loss of cartilage and pain from that, but also you can get degeneration in the joints in the spine. Especially if you don’t have strong top muscles there’s more stress to the spine than what is normal. And if you have scoliosis, even more so because you have a curvature that goes this way rather than straight up and down.
Secondary nerve compressions
Whenever you are bearing weight through the spine, there’s more stress on the inside of those curves. Just think of a “C”. If you put pressure here, pressure is running through the inside of that rather than straight through everything as if the spine were straight. So what happens over time is you get degeneration on the inside of that curve; all the joints on the inside start to compress more toward the side of the curve and those curves can get worse over time. That is if it is not fused. If you have spinal fusion with scoliosis it eliminates a lot of that because the fusion will take the stress off of those bones.
But even with fusion you can get degenerative changes above and below the areas that were fused. As you start to get this narrowing in the spine or sometimes in other joints, you can get compression of nerves. A lot of times, especially with a spine where nerves exit between all of the vertebral bones and there’s a little space between them, if that’s getting tighter and tighter, at some point you’re going to put pressure on the nerve.
That can also occur in other peripheral joints, say the elbow, if you are developing arthritis there. Your ulnar nerve passes right behind the bone there, that’s your “funny bone” called that because the nerve is so superficial. You have arthritis there and can start to impinge on the hand and start to lose grip strength.
The thing to really be aware of, as far as the secondary nerve entraption, if any of you are starting to experience sensory loss, numbness, tingling, change in sensation, that is not purely due to polio changes in muscle. That means a nerve is involved - a nerve that contains both sensory and motor fibers. Remember, the poliovirus only attacked the motor neurons. So if you’ve got sensory changes, there’s something going on in addition to post-polio changes. I think you better check it out because often these things can be corrected and the pressure taken off of it, especially if talking about the nerves in the upper extremities and you’re losing grip strength and you rely on your arms for everything you do. You don’t want to risk losing strength in your arms which really enable you to function each day.
4. Bone pain
Lastly we are going to talk about bone pain. Bone pain can be very severe pain; it can be kind of a deep ache.
Osteoporosis: loss of bone matrix with weakening of the bone
A kind of achy bone pain often is due to osteoporosis. Unfortunately, with the acute polio if you have any limb that is significantly weak, that limb has osteoporosis. Even if you are still 40 years old, that limb that is weak has osteoporosis.
Bone builds because of muscle tension and stresses to the bone. If you have a weak limb that doesn’t have that muscle tension on it and you can’t use for a lot of activities, the bone has not developed to the strength that it normally would have or to the strength that you’re trying to get. Often if you had polio as a child you’ll note also the weak limb is smaller because those bones don’t grow as much as you’re growing through childhood and adolescence. For that same reason there’s lots of stress to the bones so they don’t grow in the normal pattern.
In addition, there’s the neurologic loss. There are many studies done on what happens when people have neurologic injuries or neurologic diseases. With an acute loss of nerve function the bone releases automatically a lot of the calcium. We don’t know exactly why, but there are apparently factors in the nerve that keep the bone stimulated. Even with a full-grown adult with normal bone density, if there occurred a stroke or a spinal cord injury or something at this point, that would cause new weakness. The bones would lose calcium as well and would have secondary osteoporosis within a few months.
Other things affect osteoporosis, of course, such as immobility or limited mobility. This is especially true of people who have been in chairs their whole life. Even with the osteoporosis that started with the polio, it worsens faster because of the immobility. You have to just assume that a polio-affected limb, if it’s significantly affected where you have muscles that barely work, has osteoporosis there.
With all my polio patients, we look at rib fractures and falls. It is very important especially when you get older that you do as much as you can to prevent osteoporosis and even more so to prevent falls. Osteoporosis in and of itself doesn’t always cause pain or problems until it becomes very severe. You want to know if it is there. You want to try to keep the bones as strong as possible.
Fractures: traumatic or spontaneous
You won’t usually have acute pain unless you have a fracture. With osteoporosis that is very severe you can have spontaneous fractures without falling, without doing anything. Very commonly the bones in the spine will just compress. They can’t hold it anymore. Instead of being these nice little rectangular blocks, they compress down into pancakes. You can imagine that can cause all sorts of secondary problems in the spine and the nerves that exit from the spine.
In addition, if you are involved in any trauma, you can have severe fracture, compound fractures and multiple breaks that are very difficult to fix and very difficult to heal. I had one woman who had severe fracture in the distal femur and some orthopedic surgeon who really didn’t think too much tried to put in hardware. It just shattered the bone. She ended up losing the limb. That was the best thing we could do for her because she was more functional just losing the limb rather than having a fracture that couldn’t heal and was in constant, constant pain. She wasn’t able to bear weight on the limb anyway. You want to be very, very careful with those weak limbs especially to protect them.
So those are all the different types of pain that can be specifically related to polio. Now, what do we do about it? Well, like I said with the soft tissue thing, the thing you can do is if you are experiencing pain somewhere go in and get it checked out by somebody that understands at least body mechanics, the differences that occur with a polio to the body.
1. Assessment of pain history
(Pain drawing often helpful)
Typically when I see somebody with a complaint of pain, the first thing I like to do is have them do what I call a pain drawing or a pain diagram. It’s just an outline of the body and I have you mark on there where is the pain. There’s different symbols or different colors for how you describe that pain -- whether it’s an aching, a burning, a sharp pain, that sort of thing. It’s very interesting what happens the more you use these pain diagrams. A lot of the time I can look at the diagram and know what’s wrong with somebody. This is because the pain patterns for certain problems are so unique a lot of times.
When you go to the doctor, the more specific you can be about the pain and the faster you can relay the information, the easier for the doctor. Some people come in and just say “I hurt all over”. It’s really hard to help somebody like that because it’s real hard to say “well I don’t know why”.
Be very specific about the pain, even if there are very different types of pain in different areas. Be able to isolate the pain: I have this pain here. I describe it as an ache, a sharp, or burning. Is it there all the time or does it come and go? If it comes and goes, what seems to bring it on? If it’s there all the time, what things make it better, make it worse? When did it start? Has it changed since it started? Has it gotten worse? Has it gotten better? Has it spread to other areas? Are there other symptoms along with it? How does it impact you life? What does this pain mean in your day-to-day life? Does it keep you in bed for days at a time? Or does it mean you’re not able to work in the yard anymore? Or does it not impact your activities at all?
There are all sorts of different pain and degrees of pain. Any tests you’ve had in regards to the pain, any treatments you’ve tried, or medications you’ve tried we want to know. What’s been tried? What works? Not work? What’s made you worse? and then go from there. Then, of course, once you’re able to get a whole picture of the pain and all.
Sometimes when people have a hard time getting specific about pain, I have them go home and keep a journal for a week or so to see if you can pick out a pattern of when the pain occurs.
2. Appropriate physical exam and diagnostic studies to identify etiology of pain symptoms:
Anyway, what I would do is the physical exam. In general what we look at are the muscular skeletal system, all the major muscle groups - which ones are strong, which ones aren’t, how does that attach, the body mechanics, what condition are your joints in, how is the range of motion, how’s your circulation to that joint, how are you moving, what are the activities you are doing and how do you do them, how do you get around, what’s your means of mobility. I always assess gait of somebody who is ambulatory. In addition, depending on the type of pain, we might check other things. We might check cranial nerves. we might check heart function. And we might check the abdomen.
Not every pain experience is going to be related to the polio and the muscular skeletal system. So we always have to keep in the back of our minds, that there are other possibilities. If something doesn’t fit for musculoskeletal pain or post-polio pain, we’ve got to look at other sources of pain. And especially a lot of these internal organs can give referred pain to other areas. Everybody knows about how a heart attack causes pain down the left arm. If someone comes in with pain down their left arm you always have to think, especially if it’s coming and going, does this person have risk of heart disease and is it following the pattern of heart disease rather than a nerve problem or musculoskeletal problem. Those internal problems can often cause symptoms that appear to be muscular-skeletal but aren’t.
Once the physical exam is done we usually pinpoint the problem a little more specifically when it appears to be etiology-based. Other special studies come in as far as providing better evaluation. We may need to get x-rays, MRI scans, and bone scans if a fracture is suspected or an infection in the bone is suspected, and bone density studies if it’s a question of osteoporosis. So a lot of times further studies are needed to help pinpoint the exact origin of the pain symptoms.
In addition, if there appears to be nerve problems that are different from your original polio we often need nerve studies and EMG testing. It used to be that they required EMG testing for the diagnosis of PPS, but that got dropped as far as the criteria for making the diagnosis, which is good news to you guys because it’s a nasty test. We stick needles in a lot of your muscles. Initially they wanted practitioners to do that test to document that someone really had polio. Over time we realized that for most people really by history and exam you can be definite you had polio. So now we only use it for post-polio diagnosis if the original diagnosis of polio was in question. But we still do use it when there are new nerve problems that we need to identify where it comes from.
C. Management of Pain
What do we do about these pain syndromes that can occur? Well, the more specific we can be with the diagnosis, the more we can really get at what’s causing the pain, the more likely we are able to treat the pain and help you if not completely alleviate it, at least to manage it.
Certainly if the pain is because you have severe arthritis in the knee, and it’s your polio leg, there’s not a lot we can do to fix it. We can’t do a joint replacement in the polio limb because you run the risk of shattering the bone and not having a stabile joint. If it’s severe arthritis in the good limb, surgery might be an option. Even if it’s not a fixable problem, there are ways to manage it most of the time and at least make it tolerable and enable you to do the things that are important to you to do in life.
1. Specific conditions
Post-polio muscle pain: protection of muscles, modification of activities, pacing activities, learn to know your limits and LISTEN to your body.
As earlier discussed, post-polio muscle pain is due to really over stressing a polio-affected muscle. Sometimes it’s as simple as limiting the amount of distance you walk in a day or eliminating some of the real high stress activities. But for other people, it’s the muscle that’s bothering them or group of muscles that are very weak. If even just regular day-to-day activities cause pain every day in that muscle, then we have to be a little more creative as far as maybe changing how you do some of those activities - using the other arm or the other leg, or protecting that leg with a brace. Instead of making the muscle do all the work to get around, now the brace is helping in taking a lot of the stress off the muscle. Don’t worry. I don’t put everybody in braces immediately. I have enough experience with polio survivors to know that mostly you want to try everything short of that and usually we do. But there are times when the brace is well worth using and can make such an improvement in life that you don’t mind using it.
As far as that muscle pain, that’s something I want everybody who had polio to learn to identify and pay attention to. That is the “Listen to your body” symptom. That should be the thing that you really key in on. If those muscles are bothering you there is something you’ve done, something to really over stress them. And that’s the one thing we want to really avoid because over using those weak muscles makes them weaker.
Overuse pain: change body mechanics, alleviate excess stress, protect affected areas, rest, ice, anti-inflammatory medication, injections, and surgery.
Now with the overuse pain syndrome, these are more of the soft tissue tendonitis, bursitis and that sort of thing. Like we talked about, they’re usually the result of either body mechanics or over-using a certain area of the body. So again we have to look at how are you doing these things, how can we change those body mechanics. It might just be using a cane when you’re walking a long distance, straightening out the trunk and taking the weight off the hip that’s developed this terrible bursitis where you can hardly use the leg any more. It’s often a very simple thing.
Again, we might have to protect a certain area, sometimes just temporarily. Let’s say it’s around the ankle. We can often use an ankle support for a period of time, get the tendonitis to swell down and its gone and you can go on without using anything as long as you don’t over do.
The traditional approach to an inflammatory condition is: rest, that’s either complete rest or relative rest (which means taking the stress off the affected area); using ice or if its a chronic condition heat, but for the more acute pain ice almost always works better; using anti-inflammatory medication part of the time.
I know a lot of you don’t like using medication but sometime we just have to use it for a couple weeks to get an inflammatory process under control. I don’t like to put people on anti-inflammatories long-term unless they have significant arthritis where you’ve got to use it really just to keep those joints fluid and movable. Some of the newer anti-inflammatories aren’t as risky as far as causing GI problems. So, if it is going to be long-term use, we go with one of the safer anti-inflammatories. But in fact, the older anti-inflammatories are more effective and work faster if you have an acute condition and can tolerate the medication as far as the stomach.
And then, worst case scenarios, at times surgery is needed. That would tend to be more in the good limb or good joint that has developed an over use problem such as a rotator cuff, a serious rotator cuff tendonitis or tear. We may have to repair that before it gets completely torn and can’t be repaired because that’s an important limb for day-to-day function.
The surgery risks and benefits always have to be weighed specifically for an individual - will this surgery give enough benefit that it’s worth the risk to go through a surgery. Certainly for a lot of people surgery means a lot of planning and arrangements ahead of time because you may be totally immobilized by immobilizing a shoulder; whereas, for a person without polio it would not be a big deal. But if you rely on that solely to get around, obviously there’s a lot of planning and additional assistance that has to be arranged before any kind of surgical procedure.
Biomechanical pain/joint:: protect or strengthen joints, regain range of motion, unweight, bracing or assistive devices, surgery in select cases.
With the joint pain, if it’s a joint that can be strengthened just with regular physical therapy often that helps significantly. When its a key of just contracture around the joint without changing body mechanics, often regaining full motion of a joint will enable you to use it and take that abnormal strap off of it and the pain can go away.
But when you get to the more advanced stages of degeneration in the joints you’re going to have to take some of the weight off the joint, unweighted either through bracing, splinting, using an assistive device. Sometimes it’s a matter of I tell you to lose twenty pounds. The truth is, especially with arthritis in the lower extremities, how much extra weight you’re carrying around makes a big difference.
In selective cases surgery might be an option for the degenerative disease. That is very carefully evaluated and the whole picture looked at before we make a decision for surgery. For any of you who develop a problem and have an orthopedic surgeon really gung ho on doing surgery on something, if you’re not sure its not the right thing, please see someone like myself who knows polio and will evaluate from a non-surgical perspective and discuss with you and really make a decision with you whether surgery is the right option for you. I’ve seen too many people railroaded into the surgery that was a big mistake.
The thigh pain, again very similar to the joint pain.
Biomechanical spine pain: exact diagno-sis, modify body mechanics/position, injections, orthotics, surgery if approp-riate.
The spine is more complicated than a lot of the other joints. And again, its one of those areas where you want to see someone who really knows spines and can identify what it is in the spine that is causing problems. Is it just arthritis in the spine? Sometimes we can manage very nicely with some injections in the joints or something to modify position. Or are there pinched nerves that are a little more serious and require a little more aggressive treatment. Because the spine is a complicated area, we felt surgery is one of those options of last resort. Often times for you it isn’t even an option. This is because it would make you worse rather than better.
One of the other primary things I do clinically at UC Davis spine evaluations is conservative treatment of spine. So I happen to do a lot of the overlap cases of polio survivors with spine reactions. I did a talk on that at the conference in St. Louis because there are a lot of conditions that mimic post-polio symptoms. Often a polio survivor who’s having problems, say in the lower extremities, it could be due to post-polio where in reality it’s due to a spinal problem that can be corrected. It is always a good idea to get the spine checked out. More often than not, when we check out the spine it’s OK; it’s PPS that is causing you the lower extremities problem. But when there is something there, we need to know it and be able to treat that for what it is.
Biomechanical/nerve entrapments:
alleviate by change of activities or posi-tioning, splints, medications or injections, surgical release.
Nerve entrapment oft