PPS Manager ARCHIVES

Thank you for your attempt to help me. I know that your efforts are well extended and I'm sorry we had a misunderstanding and I apologize for getting frustrated and angry. I don't like to leave things unfinished, so please take a moment to allow me to clarify my position.

I am a self motivated person and a typical type "A" personality. Before post polio I was raised on farm work, completed high school, married (and stayed married for 34 years), raised three sons (an engineer, a nurse and a tradesman), had my own business for twenty two years, became a long distance cyclist, and had a semiprofessional career as a part time musician as well as other hobbies. In short I'm not a quitter and I don't like asking for help.

About ten years ago when the physical and mental weakness of post polio began to creep up on me I fought hard to overcome the weakness by following the advice that was drummed into my young mind and simply tried harder. It took me to a point at which I could barely perform my daily living activities and could barely walk or hold up my head due to pain and fatigue.

After learning about PPS from Dr. Jaquelin Perry of Rancho Los Amigos and many friends on the internet and in support groups I finally reversed my thinking by following Dr. Perry's advice to "Conserve to Preserve" - the opposite of "No pain- no gain". Because of this change of thinking (which I resisted for a year and a half) I learned to use assistive devices, take pills (something I've always resisted) and carefully manage diet, stress and activity. This change of thinking allowed me to recover to my present degree of abilities and remain stable for several years.

Yes, I did go through depression when I had to give up most of my dreams, but I believe that what you saw as self pity and depression in your office was a misdiagnosis. I was extremely stressed and frustrated by your attempt to re-reverse my thinking which poses a threat to the successful managing of my life with PPS.

Regarding breathing exercises - I sing and play harmonica and Native American flute as often as possible within the limits of not overdoing.

Regarding physical exercise - Besides daily living and light household tasks I stretch in a spa at least every other day to maintain range of motion and muscle tone.

I'm proud of my present condition.

Sincerely, Rick Van Der Linden

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2/99

DEAR BROTHER

by Rick Van Der Linden

This Thanksgiving I had the rare opportunity to visit with my three closest brothers and I was amazed to discover that there are still uncomfortable feelings that I can't separate from the polio experience as illustrated by the following correspondence.

Brother to me:

... ain't no use in dwelling in the past and there is nothing to gain by placing blame. No use in analyzing it to death. It's done. You are not the only one dealing with an imperfect history. Just look at the results and problems that others are having to deal with. Deal with the present and do not look for blame. I am not particularly proud of the role I have played in your past but we must put it into the perspective of our youth and the time.

My Response:

Sorry that you got the idea that I was laying the blame. What I actually said was that I'm surprised that I don't hold things against my brothers. I agree that we only have control of the present and therefore to some extent the future.

To properly manage PPS I have to reduce stress by changing my thinking and by gaining a better understanding of myself (Why do I try too hard? Why do I freak out around white coats? What motivates me? What brings me down? Why am I always willing to take the blame?). I have to understand what was hard wired into me back then. There is so much that I've put out of my conscious mind but it's still in my subconscious.

For example: While watching a documentary on PBS called "Paralyzing Fear - the Story of Polio in America" I was reminded of many of the things that struck fear into me. Put yourself in this situation: You're five years old, taken from your family and put alone in a dark room for two weeks, you know you could die, unable to move, might have to be stuck in a big, noisy can and parked in the hallway, nurses threaten if you cry, you're helpless. The scourge that threatens all the healthy children lives in you. Then, weak and facing years of slow recovery to maybe fifty percent of potential strength you're the runt of the litter and picked on by peers.

I'm not whining about it or blaming anyone (I'm sure that if the shoe was on the other foot I would have been as bad), I'm just saying that I have to face up to these things to be able to purge myself of them and take control of myself. You can ignore all that stuff but I can't - it's a management issue.

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GIVING UP

by Rick Van Der Linden

Did you ever ask yourself:

When will I be disabled enough to quit work and start collecting SSI? If I quit work and get healthier does that mean I'm no longer disabled and shouldn't be collecting disability? Will getting a disability check make me feel like a welfare case? And even worse: "Once I give up on my job what will I give up on next... my family? my life?"

I asked myself these questions over and over during a two year downhill slide before I finally "gave up" and applied for disability benefits.

It's hard to believe, but I got my life back when I gave up on work. I was surprised that it actually felt good to be able to bring home the bacon without killing myself. I proved to myself that quality is more important than quantity and that learning to ask for help improved the quality of my life.

It's emotionally difficult to accept being disabled, but it was even harder to get the message across to our civil servants. There I was trying to deny my own disability while trying to prove it's existence to them.

Once I got through the personal issues, here's what I learned about getting through the system:

Keep trying.

It's a long and complicated process, so be patient. Before you can receive Social Security Disability (SSD) you must have received State Disability (SDI) for nine months, so you should apply for SSD as soon as you have been approved for SDI. It's not uncommon to have your application rejected, so be prepared to appeal. You can get a booklet at the SS office that explains all the steps.

Documentation is important. The more the merrier as long as it proves that you tried and can no longer earn a living. I gave them proof in writing... and a lot of it. I proved that:

1) PPS exists. Reports defining the current professional understanding of PPS from various sources on the internet and from major medical publications.

2) I had polio - since records were not available I got a signed statement from my mother. (Yea, a letter from my mom.)

3) I got better - Social Security and business records proved my achievements during the good phase of my life.

4) I had new weakness and pain without another obvious cause - Reports from every doctor I'd seen for two years including primary physician, and PPS savvy doctors. Also, my personal log showing a steady decline in spite of continued job duty changes to accommodate weakness.Also shown in SSI records as my income declined.

It took two months to put the thick package together but it worked.

I should also add that I had a backup plan. A lawyer. There are strict laws regulating the industry, so it's not expensive or difficult to get professional help if you should need it.

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THE PPS BRAIN

by Rick Van Der Linden

WHAT THE VIRUS DID

To better understand how the damage caused by the polio virus is affecting us today, we need to get a rough idea of how the brain is wired for action. Every action message sent out by the conscious or unconscious brain passes through the base of the brain. This primitive area of the brain which controls our basic animal functions (moving, breathing, sleeping, etc.) is connected to the top end of the spinal column. This structure, the brain stem, is shaped like a light bulb, the Medulla (socket area) topped off with the Bulbar region.

When the polio virus enters the nervous system it causes an infection in the gray matter of the spinal column disrupting the signal from the brain to the muscle cells. Lesions (scars) from this infection can be detected by autopsy or by MRI and are seen as speckles throughout the gray matter. The resulting Paralytic Polio is partially overcome in rehabilitation but the lesions remain. In most cases (or perhaps all, but to varying degrees) these lesions continue upward beyond the spinal column and into the brain stem where sleep, breathing and swallowing are controlled - Bulbar Polio.

Usually the heaviest concentration of lesions is in the spinal column and they thin out as they progress upward into the brain stem with very few in the rest of the brain.

Doctor Richard Bruno has described the polio damaged brain stem as looking like it was shot with a miniature shot gun.

THINK AND ACT

Often we have trouble finding words, concentrating, staying awake and aware, remembering things. It's enough to make you think you're losing your mind. But why should this happen if the virus only damaged the action part of the brain?

To answer that question think about this: We are experts at compensating for weakness. If a muscle is weak, the one next to it works harder. It stands to reason that if an area of the brain is overworked, a nearby area tries to take up the slack. To put it in computer parlance, we create a much less efficient software solution in the thinking part of the brain to fix a faulty hardware problem in the action part of the brain. The result is a computer that is straining it's capacity - Central Fatigue.

DO YOU REMEMBER?

"So," you ask, "If polio didn't directly hurt my thinking brain why do I have memory problems?" I can think of three reasons. Fatigue, poor quality or quantity of sleep and PTSD.

FATIGUE: When I overuse my body, my brain is short changed in the energy department (see THINK AND ACT) and the resulting Central Fatigue causes loss of awareness. I can't remember things I never noticed.

SLEEP DISORDERS: Memories of the day are set in place during the three hours of REM sleep. This important segment of sleep can be interrupted by jumpy legs, side effects to a drug you're taking (including alcohol and caffeine), aches and pains, and so on. If, for example, during REM sleep you are reviewing my face and name and you suddenly wake up because... say you quit breathing... you may forget me.

PTSD: The third reason is perhaps a little more controversial. Post Traumatic Stress Syndrome (PTSD) can cause you to forget a particularly stressful event and make it hard to make new memories. We don't all respond to stress in the same way, but there could be a small percentage of us who suffer from PTSD.

Next issue of the PPS Manager we'll take a closer look at PTSD.

CONCLUSION

Although the polio virus invaded and damaged part of the brain it was only the action parts that were damaged. The higher functions should work just fine if we manage PPS properly.

"The best we can do" involves saving our energy for creativity. Sing, paint, make photographs, write, garden... share your vision. Even if it's just for a few minutes a day, it's the most human thing you can do. Being creative is better treatment than any drug. It lifts you above your mortal problems and brings you closer to a purely spiritual state.

I'm thankful every day that, although polio hurt my brain, my mind was left untouched.

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PTSD and PPS by Rick Van Der Linden

Once called "shell shock", Post Traumatic Stress Disorder can result from a traumatic and/or life threatening experience. PTSD has been diagnosed in people who were in the battlefield, suffered violent attack, or had a life threatening disease including polio. In fact, one poll found that about ten percent of polio survivors are also being treated for PTSD.

What is PTSD?

There are many manifestations of PTSD including: Flashbacks, anxiety attacks, depression, paranoia, memory loss and difficulty forming new memories.

Although it is usually considered to be a psychological disorder, recent studies have shown that there is also a physical component. An MRI of the PTSD brain shows that the hippocampus (the part of the brain responsible for making memories) is, on the average, 25% smaller than expected. This suggests that in an effort to forget the details of the incident the brain has modified itself, perhaps destroying the area responsible for storing or retrieving the offensive memory. In the process, future memory manipulation is partially disabled.

Flashbacks, anxiety and paranoia could be the result of being "haunted by a ghost" – although the offensive memory is buried, but the grave can't be hidden.

Could I have PTSD?

Two people can have the identical experience and react differently. It's not what happens to us, but our reaction that makes the difference - we all react to things with different intensities. Therefore it stands to reason that in the case of polio survivors PTSD can be non-existent, extreme, or anywhere in between.

What can I do about it?

There is a recent scientific study suggesting that the hippocampus may be able to rebuild itself, while other areas of medical research are making historic advances in the area of nerve cell regeneration. This is good news, but until the technology is widely available we have to keep doing our best by applying good management practices.

If you think that you are being "haunted" it might be a good idea to get a professional opinion. Counseling and/or medication are very effective in treating PTSD.

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GET AWAY! by Rick Van Der Linden

Relaxation is a key component to good health, but the type "A" personality (common to polio survivors) rarely takes a vacation. During my thirty three year working career my overtime hours greatly exceeded my vacation hours.

Now that I'm "retired" why even bother? Because my wife, Sandy, insisted and her logic was indisputable. We have a nice fifth wheel which rarely sees a weekend away, the truck is in good shape, we have the time, family to visit, new sights to see... let's go!

So we went. To Oregon. Fifteen days, two thousand miles. We took Jack, the cat and Punkin, the dog. We saw trees and lakes and streams and rivers and whales and elk and relatives and it was good. And I know why.

We had our own kitchen, bathroom, TV and bed. I had my easy chair, computer and guitar. We stopped traveling when I got tired and stayed stopped until I got rested. When mountain wildfires smoked up the air and bothered my breathing we moved to a lower elevation two hundred miles away and caught up for a couple of days.

The trip wasn't without problems, however. Due to brain glitches I almost ran the truck out of oil one time. And then there was the time I almost dropped the fifth wheel because I forgot to put the legs down while disconnecting. And the time I forgot to plug in the breaks and almost started down a steep hill. But, I was relaxed and I took it in stride. No major harm done.

In all it was a good experience. I managed to relax and face the unknown with the calm assurance that things would work out fine and they did.

REVanDerLinden 10/99

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JOY! by Rick Van Der Linden

Most polio survivors agree that stress increases the fatigue and pain we experience. To understand what this means we need to define the stress we're talking about.

Mental (or emotional) stress is worry and anxiety. Physical stress is tension or pressure. We feel it in our muscles when we are opposing gravity, trying to stay warm, or experiencing emotional stress.

If we can control or eliminate stress we can greatly improve our quality of life. That may mean we have to concentrate on relaxation.

Here are a few of the thousands of dos and don'ts you might try when stress threatens:

Stay warm and relaxed. Rest often. Lay flat or sit in a recliner. Wear an insulated body suit in the winter. Get yourself in hot water. Become a snow bird. Get a lap dog or cat. Don't worry. If you can't fix it, forget it. Enjoy being alone. Listen to soft music without words. Concentrate on your breathing. Never try to run someone else's life. Don't force a decision when you're too tired to think. Be childlike.

THE OPPOSITE OF STRESS IS...

So far we've relied on the fact that the opposite of stress is relaxation, and in a physical sense it is. But in order to really get a grasp on it we have to take it a step further and look at stress from the purely human aspect - the spirit. From that standpoint the opposite of stress may very well be joy.

I remember a time when I woke up every day with a joyful feeling. The smell of the morning air, the promise of things to come, new things to discover... Why can't life be like that every day? Now I often wake up and feel the aches and weakness that should have gone away with a night of rest. Can we have a blissful life in spite of this physical challenge? The answer is, "Heck, why not!"

GO BEYOND MANAGING YOUR PHYSICAL WORLD

Every day we learn a little more about how to manage our PPS symptoms. We improve our quality of life by bracing and pacing, better understanding of the mechanisms of polio damage to our bodies, taking carefully prescribed medications, modifying our diets and so on. All these techniques and procedures confront the physical foe but what about the spiritual?

A few years ago (after about four years of PPS 101) my wife, Sandy, said to me, "All you ever think about is Post-Polio. There's more to life than that."

At first I felt guilty and foolish because I had not noticed that it had become an obsession but after giving it some thought I replied, "I have to get control of this thing if I'm ever going get my mind back on track. If it takes all of my energy then that's what I have to do."

Since then I've put in place a lot of little habits that allow me to successfully manage PPS without thinking about it and therefore giving me more time to relax and concentrate on further reducing stress. This newsletter is one of the results of that quest. Why?

I discovered that to be happy we need to turn our attention outward. The happiest people I've met in our little PPS community are those who do one or more of the following things: Volunteer, go to church, help others, make people laugh, touch peoples hearts, create, love. It's a joy thing - the opposite of stress. And it really works.

I wish you true peace and joy.

REVanDerLinden 12/99

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For Worse and for Better

-- An e-mail from Richard Rose--

Going to the PPS lecture by Dr. Halstead was an important event for me. My wife has come to know and respect the doctor and wanted me to listen to him so that I might better understand what she was living through. Actually, I have lived with PPS for many years - I just didn't know what to call it. I knew it caused irritability - poor eyesight - migraine headaches - at best a very edgy temperament - poor sleep habits - and one helluva lot of pain. Not to mention a bunch of lesser problems that seemed to interrupt our lives for so very long. My wonderful wife Lynne has been the victim of the disease and I the victim of the ugly results. We have both lived with these horrors for most of the past 32 years. What I came to accept as being "bitchy" Dr. Halstead taught me was just a normal symptom of this disease. What I almost came to believe was psychosomatic, and likely imaginary pain, was actually severe and incapacitating, 24 hour a day, pain and suffering. I could go on with these descriptions - but of course you already know them all, don't you? Finally, during the past five or so years, I came to the realization that my wonderful wife was suffering from a disease that no one seemed to know anything about - and doctors were almost afraid to treat. After all those years and all the treatments, pills, exercises, pain and terrible suffering, she was frightened. This fear had an adverse effect on everything that happened in our lives for many years. And there were no answers.

The end result of Lynne's suffering and the personal problems we developed was that we lost that most vital link in any marriage - known as communication. We separated. That separation brought an unexpected and positive result. After many hundreds of hours and more hundreds of dollars invested in long distance telephone calls that vital link of communication was restored. Something unexpected developed and I began to have a totally new perspective about my wife and her health problems. Today there is no doubt in my mind that most all the problems of our past years of marriage can be linked directly to the outward manifestation of the diabolical disease we now call PPS. I now believe and accept the fact that my wife's pattern of irrational behavior during most of the last fifteen years has been symptomatic of the terrible pain and suffering she endured in silence. And yes, I feel terrible that my reaction to these problems was atrocious. When I should have been supportive I instead became angry. That anger begot anger and eventually the marriage broke apart and we separated.

Somehow we have survived. God granted us another chance. The lack of communication that we once had is now a link that is as strong as any God has ever granted. This past year has been filled with true miracles and today I am blessed with an extraordinary wife who loves me - and a loving and forgiving God. Now that we are in possession of the facts and we know without question that the disease of Polio is a challenge that we will both face - forever. But almost because of that disease we will live out our remaining years one of the most loving couples that God ever created. So, in a twisted sense I suppose I should be thankful for finally knowing that my wife suffers from an incurable disease. I plan to be there for her for as many years as God gives us together.

And so...how does all this lovie mush have anything to do with my meeting Dr. Halstead? Until I talked to the doctor all my thoughts about PPS were nothing more than pure supposition. I thought I knew why we had all those problems but really didn't have any scientific or professional verification for believing. That's why I asked the doctor all those questions about a subject I knew very little about. I needed an opportunity to put my questions to someone who I trusted. Someone who would be able to understand. Dr. Halstead provided the logical, scientific, and professional explanations for things that have been mysteries for many years. He provided "first person" views that explained 99% of all my questions about the past fifteen or more years. Because of his intimate knowledge of the disease his answers to my questions were "absolute". That man had direct insight to questions and situations that no one else would know anything about. One of the unexpected elements of my time with the doctor was that I came away feeling terrible about the way I had responded to my wife's suffering. I was a "bum". Instead of looking into the depths of my wife's terrible problems and trying to comprehend her true pain - I called her a "bitch". The insight and perspective Dr. Halstead granted me changed my life. So, in many respects I came away from that meeting with more benefits than someone who came through the doors in a wheelchair. I received a true and intimate education on the subject of PPS. I now understand my wife better than I have for many years.

If I could recount one single thing that I feel is more important than all the rest it would be the insidiousness of the disease. I now know that once a polio survivor feels the onset of what we know as the "syndrome" it becomes a never ending battle to survive. I didn't know that! My wife still has a problem accepting that element but now I have a background and understanding that prepares me well to help her in many ways. But I might add one thing at this point - something the doctor straightened me out about. The spouse should not "hover" over the person and try to "guide, direct,and control," the patient. Okay doc!

I hope I haven't been too far off base for you, but these are my thoughts after spending a day with Dr. Halstead.

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Illusions by Judy Sander

How many of you ignore that you have a disability? Be honest. We ignore our disabilities because the word "disabled" was and is a stigma to be avoided at all cost. It was especially a stigma when we were recovering from polio. We were taught during and after polio that the only reason we might not conquer the aftermath of this horrid disease would be that we were weak, lazy, and did not try hard enough. So, many of us have created illusions that we are not disabled or we may accept only a portion of our disabilities within our illusion. We pretend that if we wear certain clothing, stay home, smile in spite of our pain or lack of breath, no one will notice. By doing this, we are not only hurting ourselves but also those who care for us.

Of course, there are different degrees of disabilities but alas, many of us try to ignore those that we should not. Have you created an illusion concerning your disability? This may be the time in your life to face reality, the complete reality of your abilities and disabilities.

I had polio when I was six. I was paralyzed and very ill for eighteen months and at the age of seven, I weighed a mere twenty-seven pounds. After six surgeries, years of therapy and more, I had conquered polio. At least the illusion was that I had conquered polio.

I am not sure when the illusion, that I was not disabled began. Possibly, it began during the illness itself. Or during therapy? Could it possibly have been that my family considered it an illusion and the thought penetrated my very being.

Or is it because I was taught by therapists, doctors, nurses, Mom, Dad, and other relatives, through out my illness and recovery, that I could not show weakness, refuse a task, and to never ever give up? If I did, it would prove that I lacked initiative. However, if I tried my very best, never complained, believed I could do anything, everyone would love me and accept me.

After the age of 13, I pushed into things I never had done before. I played softball. I ran. (Well, I thought it was running.) I even became a band majorette, limping as I marched and dropping the baton every so often. I somehow had convinced the band director that I could twirl the baton and march.

At the Cheyenne Frontier Days parade, my illusion was broken when a large bone dropped through the muscles in my right foot. A cast for six weeks seemed to correct this problem but my majorette dream, became a bad memory.

In my late teens and early twenties, it was wonderful to wear high heels. No more brown built up shoes for me. In fact, never would I wear a brown shoe again. Short skirts with shaded hose, added to my wonderful illusion of perfect legs and a perfect gait plus no one would see the scars.

Three pregnancies with four children certainly underlined my illusion of not being disabled. Or did it? Home movies show me limping. Home movies of my children's birthday parties show that although I am smiling, I recall the pain and fatigue. A movie of mountain camping with four children only brings memories of the pain. The pain of carrying twin babies while pulling a six-year-old away from a riverbank is unforgettable. Pain pills were a main stay. Falls were a common occurrence. Even my children, limped when they walked besides me, bobbing together. Cortisone shots to the hip joint were a monthly event. Almost all of my memories of these good old days include the pain of overused, weak limbs.

In my 40's, my illusion began to fade. A cane became necessary for walking any distance. Then a fall at a sports event fractured several vertebrae because I wanted to look stylish, impress my husband with high-heeled boots and of course, the cane was in the car. No one would ever think that I had a problem, that I was disabled. Of course, they saw me limp and they saw me fall. They knew. I had the blinders on.

Still in my 40's, it was common that when my mother visited and we went shopping, she found me a place to sit down and rest at each store. Fairs, antique shows, walks on the beach, sport events and more, became impossible. My husband and my family did less together as time went by.

When I traveled to Europe in 1989, the 70 and 80-year-old fellow travelers went where I could not. They climbed the steps at St. Michael's in France; they walked the length of every cathedral. I stayed behind. Sometimes with a man in a wheelchair, but often he could go where I could not.

Two years ago I helped start our local Post Polio Support group. This was a big step in accepting my limitations. After watching, listening, and talking with many of our group members I slowly began to let go of my elusive illusion.

I watched how many walked with more grace and smoothness than I did,

yet they were wearing braces on both legs. Even those with crutches and braces moved quicker and were more stable than I. I noticed that those in scooters and wheelchairs were not limping, grasping for falling canes, or grimacing from pain. A light bulb began to glow in my mind. Perhaps, just maybe, I am disabled. Perhaps my doctors are correct, maybe I do need a brace and just maybe, a portable wheelchair in the trunk of my car.

Right before Thanksgiving in 1999, I was fitted for an AFO for my right leg.

Of course, the prescription said to go for a full leg brace, but the illusion, although becoming dim, is still there. "No, I will get by with the AFO", I told my Orthotist.

What a wonderful Thanksgiving and Christmas holiday. What wonder to have one leg stable. The fatigue was less at the end of the day. The pain in that leg was less. I was even able to process down the church aisle for the choir concert in December, the first time in years. My husband, who was in the audience, could not find me as we processed. Why? He was looking for the blonde-haired woman that limped.

Why did I not get a brace when a concerned Doctor recommended it, in my 40's? If I had needed glasses, I would have not hesitated. Of course we know the answer; the illusion was stronger than the reality.

I am still working to face the complete reality of my disability. No, not to make it more or less, just to accept it for what it is. We must face the reality that we are only fooling ourselves with our illusions. By obtaining proper bracing, a scooter or whatever it takes, will not only improve our lives but will lessen our chances of creating even a worse disability. Consider a fractured hip, arm, or pelvic. We must have the courage to accept reality and to ignore the illusions we have created about our disabilities.

I hope that as you read this you will stop, look, and examine your abilities and your disabilities. Look at yourself objectively. You very well could walk straighter, limp less, have less fatigue and pain, by stepping forward in obtaining braces or (horrors) by using a wheelchair or scooter. You could possibly do more things and embrace life with increased vigor. Your family and friends will enjoy you more. You will enjoy them more. Relax, smile, face reality and throw your particular illusion out the door. Life is waiting for you.

Judy Sander, 3/2000

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BRACE YOURSELF!

By: Rick Van Der Linden

My brush with death was at the age of five. It was the summer of 1953 in Southern California. The rodeo was in town, I did my chores on the dairy, Mom and Dad took four playful boys to the beach almost every weekend. Life was a joy. Then I got polio.

I was one of the lucky ones. Although I was hospitalized for about two months I didn't have to go into an iron lung and I regained most of my mobility rather quickly. I attribute the fact that I didn't have to wear braces or have surgery to Mom's persistent therapy and the "encouragement" of my brothers. Later, however, the pain of therapy and the pressure to not be different helped me become... ah... pig headed. (Well, that's what they say but what they really mean to say is "stubborn" or maybe "afraid of change". Yea, that's it.)

Well, Post-polio has only made me worse. It's not really the fear of change that gets me, though. It's the indecision. It takes me forever to make a well thought out choice - even in the simplest of situations.

It's no wonder that it takes me so long to get the assistive devices I need. First I convince myself that I don't need them. Then, after constant unwelcome reminders that I do need them, I give in. Six months to three years later I finally get what I need.

I have worn short leg braces (AFOs) for a several years now, and I recently got a back brace. I've also had a scooter for about six years. Each time I got a new assistive device I said the same thing, "I should have done this sooner." And yet I know that the next step will be just as slow, careful, and faltering as that first step in the morning because these days it takes much longer to recover from a mistake.

Things I've learned

I'd like to share a few things I've learned about managing the physical manifestations of PPS.

1) Braces must be used as little as possible. Although they initially reduce pain by reducing muscle use and supporting the joints, they can weaken the muscles and actually reduce overall function. At home I use high top shoes instead of the leg braces and my seating arrangements allow maximum back, shoulder and head support as a minimal substitution for the braces. I never leave home without them.

2) Assistive devices beat pain killing drugs hands down (see Drugs vs. Braces, below). Every time I took something for the pain I felt worse after the pill wore off than I did before I took it which only tempted me to take more and more drugs. I found the strength to eliminate them.

3) Proper adjustment and maintenance is required to maintain maximum benefit. I have hinged leg braces and I've found that as little as an eighth of a turn on the stop adjustment screws can make the difference between comfort and misery.

4) There's no substitute for rest.

5) A good stretching program must accompany brace use. Since braces limit movement, they can cause loss of range of motion. I find that daily stretching past the stop points of the braces is an absolute requirement. For example, my leg braces have stops that prevent my foot from pointing up past about a right angle to my leg. As I step forward this function lifts my heel off the ground without the use of my weak calf muscles. Over time this results in shortened calf muscles and an increased tendency to drag my toe when not braced. Stretching the calf muscle by forcing the toes up will prevent this loss.

6) Using braces should either reduce pain or increase activity level. Don't expect them to do both.

Drugs vs. braces.

Drugs effect your entire body. Braces address a specific group of muscles and joints.

Drugs and braces have something in common. They can be addictive. With drugs there is no choice but to take more drugs and live with the side effects or take other drugs that treat the side effects. (I've often heard, "I keep taking more and more pain killers but they just don't work any more.") With bracing you can treat the side effects yourself by limiting use and by an intelligent stretching program.

These rules also apply to breathing assistance. Asthma type inhalers can certainly make breathing easier by opening the airways and giving you an adrenaline-like rush but the side effects include irritability, shakiness and personality changes. Overnight ventilation has been proven to produce great results and there are stretching exercises to accompany their use.

So, why not use braces and drugs? Because the side effects of drugs are not reduced by brace use, but using braces can reduce or eliminate the need for pain killing drugs.

There is no easy way, but there are sensible choices. We just need to be informed and keep trying.

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Magnetic Personality

by Rick Van Der Linden

Winter is on the way, and even though Southern California is probably one of the best places in the world for someone with cold weather sensitivity, I've found that a cooling trend can be a painful experience. Even a change from 100 to 85 degrees is uncomfortable.

In the past several years I've had plenty of opportunity to get first hand experience on the subject. When I first discovered PPS in my life I Iived in the high desert community of Anza, California - elevation 4,000 feet. Temperatures as low as 12 degrees punctuated the worst winter of my twenty years as a resident there. Summer highs of 100 degrees were not uncommon.

I had just gotten acclimated to these extremes when PPS took hold. Suddenly I felt much worse during cold weather, but something confusing was going on. As the outside temperature dropped I could sit by the fire or under blankets stay warm, but it didn't isolate me from the feeling of "going down hill" as a winter storm moved in. There must be something else getting to me. Could it be air pressure? Could my blood oxygen level fall as the low atmospheric pressure cell moved in? I had learned about the effects of weak breathing muscles combined with sleep problems. Maybe the pressure drop was enough to make the difference.

To test my theory I got a wristwatch with a built in barometer. All winter I compared how I felt with the current atmospheric pressure (AP). I also made comparisons with the AP at various elevations and here's what I discovered:

1) My elevation tolerance level was about 3,000 feet. A little more in the summer and a little less in the winter.

2) The AP changes a lot with elevation change but only a little with weather change.

Are there other forces at work?

A dark and cloudy day not only looks gloomy, but it can eventually make you feel gloomy, too - we see evidence of this phenomenon in the form of SAD (Seasonally Affected Disorder) - the scourge of the Great Northwest. SAD sufferers experience depression due to a shortage of day light and treat the disorder by sitting in front of bright lights for a couple of hours a day.

Because of the muscle pain and overall weakness it is unlikely that SAD is a significant part of the PPS equation.

Humidity is another factor to consider. I certainly feel worse when the humidity is high. In fact, when I wake up in the morning I don't have to look outside to know that it's foggy. I feel it in my bones.

Another Factor Emerges.

A recent Discover magazine article entitled "Is the Weather Driving You Crazy?" may shed some new light on the subject. At the very least it's something to think about.

There are researchers called biometeorologists or bioclimatologists who study the way changes in the wind, temperature, humidity, barometric pressure, and cloud cover change the way we feel. One such is Michael Persinger of Laurentian University in Sudbury, Ontario who is studying one particular aspect of weather - electromagnetic waves. His experiments suggest that prolonged exposure to electromagnetic waves of a certain frequency and shape can affect the autonomic nervous system. These particular frequencies and shapes can occur during solar wind storms and during pre-storm air masses.

Of particular interest is the work of Rod O'Connor, one of Persinger's students. In a 1997 study, O'Connor found that the incidence of sudden infant death syndrome (SIDS) is higher when geomagnetic storm activity creates an extremely low electromagnetic level - in the range of 0.2 to 0.5 hertz. In an experiment rat pups were isolated and then subjected to low frequency fields. Rats died soon after exhibiting brain chemistry changes like those occurring when melatonin levels drop. Melatonin, responsible for controlling our internal clocks and the production of nitric oxide which is important for effective breathing, has also been associated with the incidence of SIDS.

Many PPS people suffer from breathing disorders, particularly at night when our breathing goes into automatic mode and incidents of sleep apnea occur. As a precaution for preventing SIDS doctors suggest that babies be encouraged to sleep on their backs. As adults we may be more aware of what's happening, even as we sleep, and make postural corrections to improve breathing - enough to prevent death, but not enough to prevent sleep deprivation.

Conclusion

We know that, to varying degrees, we are sensitive to heat, cold, low air pressure, and high humidity. This research suggests that there could also be natural electromagnetic forces working against us.

Managing PPS involves finding a multitude of little things that help us.

I think it's worth looking further into this strange phenomenon.

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How and Why Did I Get Polio? by RickVanDerLinden with comments by Dr. Jim Donovan

I've often wondered why I got polio and my three brothers didn't. I know that I had contracted just about every childhood disease that came along, so I must have had a weak immune system. I had my tonsils removed before I got polio. I wondered if this could be a factor. Doctor Jim Donovan, retired pediatrician and polio survivor says it's not. He also said that it's "rare to see more than one case of polio in [a] family." He went on to explain that each of us has a different "genetic immunity".

At a recent PPS meeting one of the members stated that she thinks she got polio from migrant farm workers - either from the produce they handled or from a contamination of the water supply when a flash flood that carried the virus from the local canyon where they camped. Since she lived in a very small community not far from the Mexico border, and contact with the outside world was minimal, this scenario seems plausible.

Could they have been carrying the virus without being sick? According to Doctor Jim a person can be a carrier - that is, a person who can transmit the disease without having symptoms.

Following the invention of the microscope, people became aware of the "wretched beasties" sharing our world - bacteria were discovered and later viruses was identified. As a result of these discoveries, milk was pasteurized, bacteria were harnessed for the making of wine, and disinfectants were invented. Eventually middle and upper class people sanitized their environment by killing or avoiding contact with many bacteria and viruses.

Before long we learned that some people got sick and some didn't because they had strong natural defenses and/or they had become immune to diseases through repeated low level infection. This insight led to the development of the vaccine responsible for nearly ridding the world of polio (the World Health Organization predicts that the world will be rid of polio by the year 2002).

Could we have "de-immunized" ourselves? Doctor Jim agrees that without regular contact with the virus or the vaccine people would be more vulnerable to serious infection.

I got polio because I somehow ingested an enterovirus *(see definition below) that, for some reason, my immune system was unable to fight. But the question still remains unanswered: Why is it that I go to PPS meetings and see only intelligent, good-looking people?

*ENTEROVIRUS: The American Heritage Dictionary defines enterovirus as "Any of a subgroup of picornaviruses, including polioviruses, coxsackieviruses, and echoviruses, that infect the gastrointestinal tract and often spread to other areas of the body, especially the nervous system."

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In Defense of HMOs by Rick Van Der Linden 12/00

A recent installment of Bill Kurtis' Investigative Reports entitled "Managing Your HMO" featured lawyer and polio survivor Bob Provan and his fight to help HMO (Health Maintenance Organization) patients get needed care. I taped the program looking forward to seeing "one of us" on national television. After watching it I was left with an empty feeling. I wasn't sure why, so I watched it again and this time I felt disappointed. The third time I took notes.

Mr. Provan made some very revealing statements. When his client, who is recovering from joint repair surgery, received her new wheel chair, he angrily complained that she had not gotten the chair she wanted. Wanted, not needed! What arrived was the standard issue model instead of the much more expensive lightweight model she wanted.

Mr. Provan is also involved in a possible class action suit against the HMOs. A suit that he admits would cost the HMOs millions of dollars and may even force them out of business.

The segment on the doctor who quit working for HMOs was more to my liking. However, the program was missing an important feature - the patient's contribution to the potential success of his or her HMO.

So, what's the problem?

An HMO is a business. They provide a needed service and deserve to make a reasonable profit as regulated by the US government. No problem - it's the American way.

The HMO gets a fixed amount of money each month for the health care of each subscriber. If all goes well, the excess funds from the healthier members counter balances the higher cost of the sick members. Problems arise if there are too many cases involving expensive treatments, and/or if too many people abuse the system. Then the HMO may have to spend more than it takes in. When this happens, the cost overrun can be taken out of the doctor's pay. As a result, some doctors - those who are less efficient, greedy, or just unlucky enough to have a high ratio of expensive patients - tend to be stingy with their prescriptions and referrals. This bottom line consciousness can cause a potentially good doctor to go bad.

In the case of an often hard to prove disability such as PPS, this situation can put pressure on a doctor to prove that you are not disabled.

For example: I've been with an HMO for about four years. During that time I've had two Primary Care Physicians (PCP). I told my first PCP - let's call him PCP1 - that two well-known PPS specialists had diagnosed me with PPS, and I provided him with the backup documentation. (He later would say, "Of course they're going to say you have it. How else are they going to keep their clinics going." Some attitude, eh?) He sent me to several specialists including a Neurologist, two Orthopedists, a pulmonary specialist and a Physical Therapist. They were all capitated with my HMO (on their list of local service providers who work on the high volume principal). Two of them had first hand experience with PPS. On the referral forms, PCP1 wrote, "I don't believe that Mr. Van Der Linden has Post Polio syndrome." Two said that I was uncooperative and one said that I don't have PPS. Of the two doctors with PPS experience, one said that I have the classic symptoms and should be treated as such (PCP1 told him he was wrong). The other suggested that my lung function was still acceptable, but annual testing was recommended (six years previous I had tested at 68% lung capacity and I've gone down hill since then).

After trying (and failing) to prove that I had one of a number of other conditions PCP1 finally told me that he believed I simply don't have PPS and if I wanted a doctor to agree with me, I should find another doctor. So, after a year and a half of beating my head against the wall I fired him.

This time I shopped around before choosing a doctor and it was time well spent. My new PCP (PCP2) respects me and believes what I say. (One time she said, "You know yourself very well.") She knows that I'm aware of the HMO challenges, and that I am as concerned as she is about the cost of treatment, so I won't make any unnecessary or frivolous requests. We work together for my best possible health, and her success as a healer. The relationship has worked wonders for me while costing less.

Through all of this I kept the same HMO. I never once felt that Secure Horizons was in any way responsible for the physical and emotional setbacks I suffered. It was the doctor's decisions and nothing more.

I believe that the way to get good HMO care is to have a doctor who believes in you and will fight for you. You must also do your part by letting your PCP know that you intend to do your best to help yourself.

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Editor's note: The following was recieved in response to the above article.

The Dark Side of HMOs

... thank you for your review and article. I am taking the newsletter to our next meeting to share with our group. You do a very nice newsletter.

I would also like to comment on your article on HMOs [12/00 PPS Manager]. I agree with a lot of what you said. I also feel that people have a duty to not take advantage of the system and that HMOs have a right to make a profit. What I still have a problem with is the doctors available as primary care physicians. Contrary to your situation of having a doctor who refused to believe you had PPS and then getting one who does believe in PPS, I have had the opposite problem.

About four years ago, my doctor of 15 years and his group dropped out of the HMO that I belong to and I was forced to change to another group. The first doctor I went to was wonderful. Immediately understood my situation and did everything she could to help me. After about a year, she was fired from the group. (I think it was because she gave more care than the group was willing to pay.) Then I was assigned to another doctor in the group. He was okay, but didn't want to fight the group to get me care even he thought I needed, but he did an adequate job. Because of my situation though, he made me come in on a monthly basis (that is extremely hard on me as I suffer from extreme fatigue and getting out of the house is the hardest task I face). He also was let go from the group. Then my husband got a new job and I was able to change to a better HMO (the same company but as a group, not an individual plan) and back to my old doctor. I was ecstatic! Two months later, my doctor's group went bankrupt (caused by the HMOs paying late, not paying, etc.). I am now faced with having to go back to the group who keeps firing their doctors. (By the way, my care did not involve expensive tests, medical equipment or excessive referrals to specialists.)

... I just wanted to give you a different perspective.

Thanks again, and Happy New Year to you!

Barbara Fritz

INDEX

The Importance of Staying Warm.

by Rick Van Der Linden 2/01

Even on mild days hypothermia can happen very quickly. It happened to me.

It was a breezy, seventy-degree day. I was cleaning my spa in a tee shirt and shorts, but I felt good and the activity seemed to keep me plenty warm until I got the front of my shirt wet. I remember looking down and thinking how icy cold I had suddenly become and wondering why I wasn't shivering. The next thing I know I'm covered with blankets, sipping hot tea and wondering what day it is as my memory very slowly returns right up to the moment I noticed my wet shirt.

Sandy had discovered me wandering around babbling the same questions over and over and complaining about a strange thing that had just happened to me. Fortunately, she figured out that I was cold and took immediate action to warm me. It had taken about an hour for me to return to planet Earth. If she had not been there I may have lost my life. As it was, all I lost was about an hour. Lucky me.

Many of us are cold weather intolerant. When I get too cold I first experience pain in the areas with the least muscle and then, adhering to the if-it-hurts-don't-do-it policy (iihddi), I proceed to get warm as quickly as possible.

But what if you reach your low threshold and continue to get colder?

Hypothermia can really sneak up on you. When your core temperature gets down to 95 degrees, memory and judgment begin to fade, you begin to lose control of muscles, and speech becomes difficult. Below 89 degrees consciousness begins to fade in and out and your heartbeat slows down to fatal levels.

To prevent this from happening, our bodies are equipped with an emergency warming response - shivering. Shivering requires a lot of energy to be directed to the muscles as your body burns calories to create heat. If you get cold and you don't have the energy available or if you are shivering and then suddenly stop, you are in for serious trouble.

Complicating the situation, in my case, shivering hurts (refer to iihddi above).

I casually mentioned the incident to my doctor and, doubting PPS as the cause, she referred me to a very nice neurologist. I now have an EEG printout proving that all the marbles are there.

Now, if I could only use them.

I usually dress in layers and stay warm and dry but that day I slipped up. PPS requires full time management. Never let your guard down. Know your limitations. Never bite off more than you can chew. Your life is on the line.

INDEX

Good Grief by REVanDerLinden 06/01

Are you a perfectionist? If you are you can put a lot of stress on yourself and as you know, stress can be very painful.

Speaking to the Hemet group on May 16th clinical social worker Illa Rogers showed how very well informed she is on the subject of dealing with a loss. Illa who has worked with the Hemet's MS group for years noted that there are many similarities in dealing with Post Polio.

She pointed out that a disability is a family disorder affecting everyone close to you in many of the same ways it affects you. It requires strength and willpower to adjust to the repeated losses of PPS and find harmony with your limitations.

Ms. Rogers repeatedly used the word "Truth" in her presentation. In order to be yourself, you have to accept who you truly are - disabilities and all. Only then can you take the next step - answering the question, what can I do about it?

A significant loss in usually followed by a period of grief. Feelings of sadness, anger, and guilt are normal as is the sensation of fatigue. Grief can be accompanied by sleep and appetite disturbances as well as absent minded behavior and social withdrawal.

Many of the physical sensations that accompany grief - tightness in the chest and throat, feeling short of breath, muscle weakness, and lack of energy - are symptoms shared with PPS. With every passing year new losses may occur. It is therefore very important to know how to grieve efficiently and thereby speed up the process.

Grief can be a continuous process or it can come and a sudden unexpected burst. The key is to be gentle with yourself. Think of the compassion you would have for others in your situation and apply it to yourself.

One of the more memorable and entertaining statements she made regarding our attitude in dealing with reduced abilities is, "I didn't vote for this!"

Illa Rogers, Clinical Social Worker, also works for the Romona Hospice and has a private practice in Hemet. Call (909) 766-9744

INDEX

Weak Bones and Weak Thyroid.

by Rick Van Der Linden 06/01

There are two medical conditions that threaten polio survivors - osteoporosis and hypothyroidism.

Osteoporosis - Thinning of the bones.

Although the main risk group for this condition is post menopausal women, anyone who does not do enough weight bearing exercise is fair game.

For people with PPS the combination of thinning bones and a tendency to fall can be dangerous, even deadly.

Since we can no longer provide the weight bearing exercise needed to prevent bone loss it's a good idea to get plenty of calcium in our diet. Many doctors recommend at least 1,200 mg calcium supplement with vitamin D for the high-risk groups.

Hypothyroidism - under-active thyroid.

According to Dr. Perry this condition is three times more likely to affect post polio people as compared to the general population. Symptoms include lethargy, dry skin, hair loss, and depression. The usual solution is to take a thyroid medication.

A connection between the two?

The Veteran's Affairs Medical Center in Los Angeles ran a little study and found out that the two "medications" may not get along with each other very well. It appears that calcium carbonate prevents the absorption of the thyroid medication. Lead researcher Nalini Singh, MD suggests that to play it safe you should take your thyroid medication two hours before you take your calcium supplement. Although they're not sure yet, this could also apply to calcium rich foods as well.

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WILL STEM CELL RESEARCH HELP US?

by REVanDerLinden 8/01

WHAT ARE STEM CELLS?

We are made up of thousands of different types of cells - skin, liver, heart, bone, blood, etc. - each with a different makeup, all coming from the original two cells - egg and sperm.

Think of your body as a garden. Your genome is the gardener and he has a packet of seeds. Each seed will grow a different plant - each of them necessary to make your garden complete. From one of these seeds a stem sprouts up and spreads out to become your vascular system, from another your nervous system and so on.

Most of these seeds - stem cells - grow into organs that retain seeds of their own to use in case self-repair is needed. The heart, liver and brain are among those which don't succeed at this. While skin, bones, muscles and many parts of the body can fix themselves, the nervous system, when damaged by PPS, can only make very limited compensations but no major repair of damaged cells. That's where neurological stem cells - like the ones that originally built our nervous systems - would come in handy.

JOHNS HOPKINS RESEARCH

Doctor Jim Donovan has been reporting to the San Diego group the progress being made in the field of stem cell research and the implications for all neurological disorders. Since he also has PPS, Dr. Jim is very close to the subject. He is also close to the people doing nerve regeneration researche in San Diego county. He recently e-mailed the following exciting report:

<< ...the Wall Street Journal for today re: Drs. John D Gearhart & Douglas Kerr at the J. Hopkins are reporting in unpublished work the use of embryonic human stem cells on ALS mice and rats---and the restoration of function!!! I really hope that this is the break that we all have hoped for--not just our generation but also for those following!!! >>

SALK INSTITUTE RESEARCH

Research is vast and ongoing in many areas of nerve cell regeneration at this famous facility. The following is just the latest of many reports.

A recent Discover magazine article by Josie Glausiusz titled "Brains of the Living Dead" reports that "Neuroscientist Fred Gage has pulled living cells from the brains of corpses - and the deed may eventually lead to ways to harness the body's recuperative powers to treat degenerative brain disease."

The article goes on to explain in detail how this might be done and the benefits of avoiding "the ethical problems of harvesting fetal brain tissue."

AND MORE RESEARCH

A test is under way in which a man's own fat cells have been genetically modified to function as stem cells and were then injected into his brain. The hope is that the cells will regenerate those lost to Parkinson's Disease.

COMMENTARY by REVanDerLinden

Stem cell research has been topping the news lately because of the controversial process of using fetal stem cells.

Anyone who believes that life begins nine months before birth is outraged by the fact that these potential humans are being harvested for science. The statement that "Pregnancies are aborted every day anyhow, so we might as well use the donated tissues" is often countered by the argument that "this kind of thinking just makes abortion more socially acceptable."

Those of us with degenerative neurological disorders such as Alzheimer's, ALS (Lou Gerrig's Disease), Parkinson's, MS, PPS - as well as those with spinal cord injuries - are pinning our greatest hope on this line of research.

There are several different roads to the same place. Fetal stem cells, cadaver stem cells, genetic alteration of ones own cells, and who knows what else will pop up in years to come. Maybe one day stem cells will be synthesized and delivered by nanobots.

Maybe - some day.

The fact is, I need help now and fetal stem cell researchers seem to be the current leaders in finding a successful remedy.

I take a firm position squarely on both sides of the fence. Since my feet don't quite reach the ground on either side, you can imagine why this is an uncomfortable place to be.

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Pain, Worry, Fear, Frustration, Anger and Hate by REVanDerLinden 10/01

Sometimes, through no apparent fault of our own, something can happen and we get hurt. It can be an accident, an illness, or the actions of others. It can be something small like losing your keys, it can be something big and personal like polio, or it can be more far-reaching like the events of September 11th.

What really matters is not what happens to us, but how we react to it.

When I first recognized the pain and weakness that later proved to be post polio syndrome, I became frustrated and confused. I got mad and fought back. I struggled to improve my strength and endurance while ignoring the pain. It was frustrating, it was counterproductive, and eventually I realized that I was literally digging my own grave.

Anger hurts. And, it mostly hurts those who are angry. By my misguided intentions I hurt myself for two years before I took control of my emotions. "They" have hurt us, but they are hurting themselves right off the face of the earth.

I am heartened by the knowledge that our country is reacting to "their" anger not with anger, but with careful management of available resources -- with a quiet resolve to take control of that which is out of control. Just like managing PPS.

And just like PPS it will go on for a long time. There will surely be occasional setbacks, but with self confidence, careful reasoning, and a sense of humor, the long term result will be to our advantage.

They haven't made us hate. We win.

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THE AWESOME POWER OF SELF MOTIVATION

(Holiday message from Rick Van Der Linden the editor of the PPS Manager - 12/01.)

I'll never know if I would have been as motivated if I hadn't had polio, but the pressure of having to fight my way back into the normal world of school and home life must have been a great influence. How else could a kid overcome such sizable obstacles? Push it to the limit all the time.

In a way things haven't changed all that much. I've often said, "I've always done all I can do. PPS hasn't changed that". I've also said that to successfully manage PPS you have to reverse your thinking, but now I think it's more a matter of redirecting our power of self motivation.

In the early years of PPS I didn't know what I was doing. I pushed myself to overcome the pain, work through the weakness, fight back with every ounce of energy. Eventually I learned that my power of self motivation was working against me. Eventually I found out that the greatest pain of all is the pain of making a change. What I didn't realize at the time is that it's not really that big of a change. Not a reversal of direction, but simply a slight re-direction. Instead of motivating myself to do more, I had to motivate myself to do less.

Now, in this holiday season (my eighth since being diagnosed with PPS) it's easy to decline invitations, to say no to visiting or other activities that will over stress me, to be happy with less celebration. I've become accustomed to the understanding that less is more.

This season I'm celebrating my right to beg your pardon, it's time to take a nap.

INDEX

01/02

Everything You Ever Wanted to Know About

Owning a Home Spa (Okay. Everything I know about it)

by Rick VanDerLinden

As with many polio survivors, PPS was ushered in with a run-down feeling -- the feeling of "getting old before my time." My first reaction was that I must be getting lazy in my old age, so I started a rigorous exercise program. It wasn't long before I had aching muscles. I recognized the need for massage therapy, but it was too expensive and not available on demand. Besides, I was too shy to even try it. Solution -- a home spa.

My first spa cost $250.00. I moved it myself (with a lot of help from my friends), spent about $125.00 for a concrete foundation, $100.00 for the electrical connection, and $650.00 to replace the pump/heater package. I didn't mind the repairs and other expenses because it had an acrylic tub which will last many years. (Later I traded a bass guitar for a privacy fence.)

I then proceeded to discover the joy of owning a spa. After a long bike ride the spa would melt away the muscle ache in peace and solitude. Stretching was easier in the spa, and was seldom skipped. On a cold winter evening I could watch the snow fall through the mist rising from the hot bubbling water. On a hot summer day the water, set to a lower temperature, was refreshing.

At first the spa was a wonderful luxury, but as time went by and PPS reared it's ugly head in full force weakening muscles became more sore with less effort and the spa became a necessary part of my management program.

You probably know how difficult it is to shop for equipment and set up new procedures when you're fatigued. Fortunately, the months spent learning spa care and maintenance, and massage and stretching procedure were out of the way before I really needed them. With this in mind I share with you all I have learned about spas.

Advantages of having a home spa

· PPS related cold intolerance is washed away.

· We weigh about 90% less when we are suspended in water -- what a relief.

· Even though we may do very little exercise, we still work hard to perform our daily minimum activities and lactic acid still builds up in our overworked muscles. The jets massage away the burning acid.

· Stretching improves range of motion and reduces stress on joints. It is much safer when the muscles are warm and relaxed.

· Stretched muscles help prevent skeletal injury in the case of a fall.

· Kicking your legs and waving your hands through the water can provide a little bit of aerobic exercise with less overall stress.

· It's very relaxing. Less mental stress = less physical stress = less pain and fatigue.

· Your spa is available any time you need it.

Choosing the right spa for you

Be careful that you don't try to save space or money by getting a one person spa. You need to be able to stretch out in all directions while fully suspended, so your best bet is a four or more person spa depending on how tall you are. It's also nice to be able to get into the lounge chair position for rest periods. The following recommendations take these factors into account.

1) The ideal depth at the bottom should be about the distance between your shoulder and butt when in the seated position. One lounge seat plus bench seat(s) will give you room to move around and a place to rest.

2) Dimensions should be no less than your height. I'm 6'2" and my spa is 7' X 7' inside dimension.

3) A strong pump will give a good massage. The more jets you have the stronger the pump needs to be. My old spa had 4 jets and a 1 horse motor. My new one has 22 jets and two 4 horse motors.

4) One of the biggest arguments against owning a spa is that most people forget to use it.

a) I use mine about three or four times a week in the Winter, a little less in the Summer. I consider the spa to be my second best treatment for PPS symptoms (the first is "don't over do".)

b) One professional massage treatment costs about as much as the monthly cost of electricity to run a spa.

c) You can use the "waste of money" theory to your advantage by buying a used spa. If you can't find the right one in the classified ads you might try running an ad -- "Turn your unused spa into instant cash" for example. You may find the right one for as low as a tenth of it's new price.

Spa location

The closer it is to your shower and dressing area the better (more on this later). My shower has two doors. One to the master bedroom and the other to the spa. The floor of the shower is slightly raised and I have a redwood step up between shower and spa so that it's one step up and I can sit on the edge of the spa and swing my legs over into the spa. Getting out and rinsing off in the shower is just as easy. Having the spa that close to the shower means that you only have to dry off and dress one time saving a lot of energy.

If it is enclosed you are more likely to use it in the winter when you need it the most. You can put it in the room next to your shower, add a room, put it on a the porch and build a wind break/privacy screen around it, or buy a redwood enclosure.

Ventilation is important. I was overly concerned about this when I designed my spa room. I have a 4' sliding glass door (8' with both glass panels removed -- big enough to get the spa through) three windows and two sky lights. I find that the room ventilates just fine with one sky light opened a few inches above the spa and the sliding glass door opened a few inches.

If you have an indoor spa it's a good idea to keep the air separate from the rest of the house. I have a french door between the spa room and the bedroom, and a fully sealed shower door. I also have a built in heater/AC mounted on the wall. This comes in handy on the colder days. Also, it's nice to have lots of plants in the room, and they may need to be kept warm.

As you can see there are many options, but you may need to check with a contractor to be sure you meet local building codes.

Use and Maintenance

There is a direct relationship between how carefully you use your spa and the required water maintenance. If you're careful, the water should only need replacing three or four times a year, and although the chemicals are not terribly expensive, improper use could easily double or triple the cost. Since I'm fiscally conservative (cheap) my recommendations should save you some time, energy, and money.

Organic materials (dirt, body oils,etc.) and soap and other body and garment care products shorten water life and increase chemical use. Take a good, hot, soapy shower and rinse well before using the spa. If you must wear clothing in the spa, make sure it is thoroughly rinsed of laundry products before entering the spa. Don't put your head in the water -- face and hair are particularly oily and it's hard to rinse things like conditioner out of your hair in the shower.

Normally, the main chemical you use is Bromine. It comes in granulated and in tablet form (for the floating dispenser). After filling the clean spa with fresh water, use "Metal Be Gone" or some similar product to neutralize the water, then add granulated bromine as indicated by water test kit. It takes a few weeks of testing and adding granulated bromine to get it settled down, but after that the floating dispenser (adjust opening to about 1/2') can then be used to maintain proper bromine level with normal use. If soap bubbles start to form during use, there is a liquid product available to fix it.

Clean the filter weekly.

If you get behind on your bromine and the water gets cloudy, it's too late to fix it by adding chemicals and you need to drain and clean the tub.

How to know when the water needs changing

I look for one of three things -- all involve running the jets with air input turned on and assume that water is clear and that test show bromine is at proper level.

First, bubbles may form that are dark in color and/or stay on the surface or leave a film after jets are shut off (I call this ugly bubbles). If the bubble remover solution and filter cleaning do not cure it, change the water.

Second, run the jets with air, then shut of the jets and count how many seconds it takes for the water to become clear enough to see details at the bottom of the spa. Fresh water takes virtually no time to clear. I change water if it takes more than eight seconds.

Third, look across the surface of the water while the jets with air are running. If the popping bubbles send up a little flare it's time for a change. Also, the little flares can get in your nose and cause sneezing -- another sign that it's time.

Cleaning procedure

Shut of power to spa, drain water, clean filter, wash tub with recommended product (I use a non-abrasive foaming cleanser), rinse well. Refill, turn on power with spa set to thermostatic control (see below), add metal-be-gone, add bromine, check floating dispenser. Check bromine every other day for first week, once a week thereafter until you get the hang of it.

Timer controls

Automatic controls have two basic settings. Usually there is a switch that allows you to choose between clock only and thermostatic control functions.

The thermostatic control function is used to heat the tub after refilling. It is also the setting to choose if your spa is outdoors and may be subject to freezing.

The timer control setting allows the pump/heater to run only at specified times. I run mine twice a day for 45 minutes at a time. This keeps the water hot when I expect to use the spa and performs the necessary filtering cycle.

Recommended temperature

Based on fifteen to twenty minutes spa time: Winter - 98 to 100 degrees, Summer - 96 to 98 degrees. The hotter the water is the less time you can spend in it. If you have rubber legs or feel fatigued when you get out, either you were in it too long or it was too hot.

My routine for PPS management

Set vents and open spa before showering.

1) Relax in spa and let muscles warm up.

2) Massage. With air jets running move each muscle across convenient jets.

3) Stretch. Shut off jets if you want to (I like it quiet or listen to soft music). I stretch the back of my legs, quads, hips, arms, neck, back, the works. The stretches you do depend on your needs and abilities and/or the advice of your physical therapist. A good reference, however, is the exercise video from Warm Springs Georgia called "Aquatic Therapy for Polio Survivors", Part 2 of the "Wellness for the 90's" series. (800) 235-2156.

4) Relax. You may want to do some more massage.

Total time including shower and dressing - 1/2 hour.

Things to be Aware of:

1) Make sure that the spa you choose is big enough.

2) An Ozone generator is a useless ripoff.

3) Make sure your timer can be set to run as long as you want at whatever time(s) you choose

4) Never use spa when you are high. You might accidentally drown yourself.

5) Always think of your spa as a therapy tool and use it on a regular basis.

You can probably afford your own spa

If you own your home and have descent equity, you may be able to get an equity loan to cover the cost of a spa without increasing your monthly payment. If your new payment is reduced by $30.00 per month, you've covered the monthly power and maintainance cost as well.

What if I don't own my home?

The exercises and some of the advantages can be found at a health club. Most clubs have a hot spa or heated pool. If you rent and have a patio or yard available you may be able to get a full size spa. Although they are not as versitile, there are also small inflatable spas that run on common household current.

Conclusion

As a PPS manager, a home spa might be one of the best things you can do for yourself. Proper use can improve mobility, reduce pain, and relieve stress better than any other treatment, professional or otherwise. I wouldn't be without mine.

Enjoy!

INDEX

[If this were to be the last PPS Manager newsletter I write, what would be:]

The Final Word.

Polio survivors have learned that the two biggest triggers for PPS symptoms are physical stress and emotional stress. Manage both and you'll have a better life.

Careful management significantly reduces fatigue and pain.

Learn to conserve energy. If it hurts, don't do it. Don't let your pride or past fears prevent your using braces, wheels - whatever helps you get around with as little effort as possible.

Your muscles are weak. Besides loss of muscle mass and the possible breaking down of nerve/muscle connections, overuse can and often does result in a reduction of nutrients reaching the brain. The resulting "central fatigue" reduces memory function, concentration, and the ability to focus your energy (assuming you have some). It can cause depression and increase pain.

Don't feel like a wimp just because you need to relax your body and mind more often. Diligently pursue comfort.

Understanding reduces emotional stress. Read a book or two.

Dr. Halstead, Dr. Julie Silver, and Richard Bruno have written about their research and clinical experience with PPS. Read. Skip a chapter if it makes you feel uncomfortable, but keep trying to learn.

If you have trouble holding a book, get someone to read for you or find a better way to hold the book. I read laying down, head slightly elevated, elbows resting on the bed, book balance above elbows. To be able to do this properly, I had to get reading glasses with just the right focal distance. Forget the fine print.

You are not alone.

Some of the most successful PPS managers are those who have a spiritual connection. Organized religion, PPS group spirit, reaching out by charitable contributions and/or volunteer work, music... try it all if you can. And keep learning.

Your doctor can help...

...if you have the right doctor, that is. If you don't have the right doctor, try a new one. Your local PPS clinic is a good place to start.

Start your day with a song.

The poliovirus went where the action was. It stunned the body's movement, breathing, emotional response... but fortunately it left the mind and heart alone. Sometimes they are all you've got - use them. Enjoy life any way you can.

Reduce frustration.

Don't feel responsible for the problems of the world. News stories and TV drama are mostly tales of the unusual, not every day stuff. Don't forget that there's more good than bad in the world and choose to take part in the good stuff. If this means not watching the news, or not reading the newspaper, or turning off the TV, so be it.

Good music, prayer, positive affirmations, humor, self improvement, volunteerism, and love are just some of the antidotes to frustration. Find one or more that work for you and keep up the good work.

Rick Van Der Linden 10/02

INDEX

Escape Velocity

by REVanDerLinden 12/02

Scooters are great. I got my first one in 1995 following a year and a half of being virtually house bound. Being a former cyclist, the first thing I noticed was that even a little bit of wind in my hair is exciting. Kind of like being on a bland diet for a long time and then going out for Mexican food. Quite a rush.

Before buying a scooter, however, I did a little bit of homework and discovered that it's not just a matter of being able buzz around the hardware store or the zoo or the mall, but it's also a matter of how well you can do it - a matter of speed and maneuverability.

Maneuverability good.

My first scooter ride was at the San Diego zoo. It was early in my PPS years and I could get around without braces, could even walk a few blocks, but I knew the day would ruin me and spoil everybody's fun if I tried to walk the whole time. Lo and behold they had electric scooter rentals.

For twenty five dollars I got a new red four wheel scooter for the day. It was great cruising the paved paths, being able to park in the shade to rest and people watch,or hurrying to catch a program across the park. But problems arose when I got caught in a crowd at the snake house.

At six one, two hundred pounds, I was accustomed to towering over people but suddenly I became invisible. It was all I could do to avoid running over people's feet or catching them in the shins, and I was bumped into several times by unaware snake gawkers before I finally escaped. It wasn't easy, though. The four wheeled tiller style scooter had an enormous turning radius, so every time I backed up to get a new angle the gap was filled with butts and legs and I had to wait or raise my voice to plead for room for another short move. I became frustrated and a little claustrophobic.

Speed good.

My second experience was in a department store. Inside the door was a line of yellow bumper car looking things about the size of a VW and sprouting baskets front and rear. I was there to buy shoes and noticed the shoe department was at the rear, so I thought I'd give the bumper car a try. I'd call it a bad decision if I hadn't learned from it.

The first thing I noticed was that it was slow. If I had been sightseeing or window shopping it might have been alright, but I wasn't. I knew where I wanted to go, I felt self conscious, and I wanted to get the experience over with. Instead, it felt like I was caught in one of those "feet sticking to the railroad tracks and the train is coming" dreams. Big eyes followed me in slow motion, children pointed, I felt trapped.

Then another problem arose. Not only did I have to swing wide to make corners, but it had an electrical problem that resulted in a sudden stop every time I turned to the left. Only right turns, swing wide, don't hit that display, try to ignore the spectators... all in slow motion. It was terrible!

Well, eventually I got my own scooter and lift. Since I had to pay for it myself, I found a cheap used one and, being the mechanical type, I was able to rebuilt it and keep it in good running condition. It has three wheels (not as maneuverable as some, but better than many), an extended chassis to accommodate my size, and it has a top speed of six and a half miles per hour!

Six and a half miles an hour doesn't sound like much, but it's twice as fast as the average walking speed. This means that I'm in and out in half the time and if I get uncomfortable or feel the crowd closing in I can get out fast.

My old Pacesaver has served me well for over six years, but my next set of wheels will probably be very different - a power chair with joy stick control. One with four wheels. With the joy stick control you can rotate the vehicle in place for maximum maneuverability indoors. It doesn't have that cumbersome front tiller like a scooter, so it gets up close to tables and counters. And, if it can go at least six miles per hour I couldn't ask for more.

I looked at the six wheeled Jazzy but I doubt that it would suit me. I'm weaker in the upper body than in the legs and the Jazzy appears to bounce back and forth when stopping and starting which would require a strong neck if you don't want to bob around like a dashboard dog.

The Quickie looks pretty good. A rectangular tube frame, cool colors, shock absorbers... Best of all, in an informal parking lot speed trial Ann Corey's Quickie whipped me good. It's also very maneuverable indoors. Ann never has to back up and get a second shot at sharp turns the way I do.

Now all I have to do is talk my HMO doctor into prescribing one. But that's another story.

INDEX

Dr. Karen Jakpor

By Rick Van Der Linden and Karen Jakpor

Her bright smile and intense, intelligent eyes mask the fact that young doctor Karen Jakpor is disabled. It's not until she hooks up to her BiPAP machine to get a much needed rest for her weakened diaphragm and intercostal [chest] muscles that her problem becomes obvious.

She started having trouble in the fall of 1996, only 9 years after graduating from medical school and five years after starting her career as an obstetrician-gynecologist. She had no previous history of asthma, and suddenly asthma attacks were interfering with her ability to continue practicing medicine but she and her doctors couldn't figure out why. Her symptoms continued to worsen with medical treatment. With no sure diagnosis to suggest a way of treating her affliction, doctors gave her steroids to keep her breathing. High dosages of steroids.

Then one day, months later, a doctor discovered the cause of her symptoms - she is allergic to a substance that's as much a part of a doctor's work as a stethoscope. Latex. Latex gloves slipped on before every procedure, snapped off after, sending a fine cornstarch/latex dust into the air and breathed into her sensitive lungs. Snapped off by every nurse and doctor who treated her during her earlier visits to the hospital. She hadn't responded to medical treatment because she was continuing to be exposed to latex.

The huge doses of steroids given to her in the meantime caused damage which weakened her muscles—a complication of steroids called steroid myopathy. The muscle weakness also affected her respiratory muscles, in a way similar to post-polio syndrome. And, the capacity of her adrenal gland to produce natural steroids was ruined. Now she is steroid-dependent and uses a BiPAP machine every day for respiratory muscle fatigue. In the past seven years, Karen has been admitted to the hospital or the ER on 37 occasions due to asthma or anaphylactic reactions to latex, asthma flare-ups, or ventilatory insufficiency due to respiratory muscle weakness.

This is how I came to meet Karen. She joined the Riverside Polio Survivors Group in an attempt to meet other users of non-invasive ventilators (NIV), but she was surprised and amazed that there were no NIV users at the meeting. Later, she told me she wouldn't be surprised if as many as half of the people she met had respiratory muscle weakness and might benefit from noninvasive mechanical ventilation.

During our lengthy conversation that sunny day at the park she learned that I was struggling to get a BiPAP and I discovered that I could definitely benefit from her experience with respiratory muscle weakness and in dealing with the health care system.

Some things I learned from Karen.

The next day she began filling me in on her seven years of research and experience by sending me a list of links.

Two big things I learned (so far):

First, I had been under the impression that if your ability to breathe is slowly going downhill because of PPS, you will eventually have to have a tracheotomy. She says Dr. John R. Bach, a pioneer of noninvasive mechanical ventilation, says it isn't so. In fact, Dr. Bach's Center for Noninvasive Ventilation Alternatives and Pulmonary Rehabilitation at the University of Medicine and Dentistry of New Jersey (UMDNJ) has successfully reversed hundreds of trachs in patients with respiratory muscle weakness. Check out http://www.doctorbach.com. The trick is to use specific equipment and certain techniques to keep the lungs clear of secretions. A patient with weak respiratory muscles may also have a weak cough. Effective coughing is necessary to clear secretions and prevent pneumonia. Trachs are foreign bodies, so they cause the body to produce even more mucous and secretions. It is possible to manage respiratory muscle weakness with alternative methods and avoid trachs altogether. Patients with severe respiratory muscle weakness can be managed even 24 hours a day with a portable volume ventilator or BiPAP machine attached through a nasal or oral mask or interface. But there must also be a plan for managing secretions – such as using a Cough-Assist Machine.

The medical care you receive is limited by the state of knowledge of your physician. Most physicians, and even many pulmonologists, have limited knowledge of non-invasive mechanical ventilation, respiratory muscle weakness, and post-polio syndrome. Your physicians may resort to invasive traditional methods such as tracheostomy simply because they are unfamiliar with non-invasive mechanical ventilation. Or your quality of life might be unnecessarily suffering because your underventilation is not recognized and not treated with something as simple as a BiPAP machine while you sleep.

A key message Karen gave is that you need to do whatever it takes to find knowledgeable doctors—even traveling a distance or paying out-pocket in order to obtain a consultation from a pulmonologist knowledgeable in respiratory muscle weakness. That consultant then can help you get your own physicians in your HMO steered onto the right course of treatment. The Post-Polio Health International (formerly GINI) website at http://www.post-polio.org/ivun/d-p-a.html#key lists some physicians with an interest in noninvasive mechanical ventilation. It is called the International Ventilator Users Network Resource Directory of Health Professionals. You must work hard to be your own advocate. The problem is, many physicians are not receptive to being educated by their own patients. That is why it can be helpful to see an outside doctor and then give your doctor the consultation report with the treatment plan. Another suggestion she had is to buy your doctor a book—Noninvasive Mechanical Ventilation, by John R. Bach, MD. Published by Hanley and Belfus (Telephone 1-800-545-2522). ISBN: 1560535490. Cost $39.95, 600pp, softcover, copyright 2002. (http://www.us.elsevierhealth.com/product.jsp?isbn=1560535490 )

The second point is that sub-clinical respiratory muscle weakness can cause a serious decline in quality of life and fatigue. First, you need to have it recognized, and often physicians do not truly appreciate the degree of respiratory muscle weakness. There is often a dramatic decline in respiratory muscle pressures, before there is just a relatively small decline in lung capacity. But patients are almost always sent for just standard pulmonary lung function tests. The lung capacity will be measured and it might be somewhat low, but usually the respiratory pressures will not be measured. The respiratory pressures might be alarmingly low, but nobody will know unless they are measured. Another thing is that pulmonary function tests are done standing. But when a patient has diaphragm weakness, the patient has an even harder time breathing while lying flat. In testing for diaphragm weakness, a patient should have the pulmonary function tests performed standing, then lying down. If there is a 30% fall in the lung capacity, that indicates diaphragm weakness. So you should ask your doctor to order pulmonary function tests done vertical, then supine. And you should request the physician order tests of the respiratory muscle pressures- Maximal Inspiratory Pressure (MIP), Maximal Expiratory Pressure (MEP), and Maximal Voluntary Ventilation (MVV) at test of respiratory endurance.

It can be an uphill battle to get the proper equipment. But the first step is seeking out a knowledgeable pulmonologist. Then you must have the proper testing, so you can receive a proper diagnosis. Then you might have to battle your HMO for the equipment. But if you need it, you will find a dramatic improvement in your quality of life.

Dr. Karen Jakpor has walked a long and twisted trail to get to where she is today. I feel fortunate that she made the effort to reach out to us - to share all she has suffered to learn. She has shown us what it means to be a healer.

INDEX

Back Story by Rick Van Der Linden 02/03

[This article is the result of online research and testimony from PPS people who have had experience with back problems. Although some approaches and treatments may be suggested here, every back problem is unique and your decisions regarding treatment should be carefully guided by your research and your trusty physician - Ed.]

Lower back pain is a common problem for older Americans. We are all subject to our upright anatomy and society's pitfalls: stress, excessive body weight, and underuse, overuse or improper use of our bodies - the formula for back problems. In the presence of PPS, there is an increased likelihood of back problems even if we're not members of the old TV and snack foods gang. Unequal leg length, unbalanced muscle strength, scoliosis, and big belly (who, me?) are some of the common problems that put stress on the lower back.

Among the usual good methods of improving back strength, and therefore preventing pain, is proper diet, aerobic exercise, strengthening exercise, stretching, and balance training. Other helpful ideas your doctor may suggest are hot packs, cold packs, sleeping with a pillow between your knees, and strengthening your abdominal muscles with low impact exercise (swimming, Tai Chi, and so on)

Medications are also used, but there are serious pitfalls. Pain killers only stop the pain. They don't fix the problem. They often make it worse by preventing our brain from knowing there's a problem, thus allowing the joint disintegration to continue. On the other hand, non steroidal anti inflammatory drugs such as Advil or prescription medications can be helpful especially when used in conjunction with a carefully guided physical therapy program.

Surgery

Back surgery is the last resort. In the case of back repair surgery (not fusion) the odds of improvement are not very good for people without PPS and much worse for us. In recent years three PPS people who had back surgery reported that they got no better and one got a lot worse.

It should also be noted that there is a possibility of complications with any surgery, particularly back surgery. A small chance of complications is possible after fusion including infection and outright failure of bone to fuse. Smoking, diabetes, obesity, osteoporosis and failure to follow post surgery therapy reduce the chances of success.

So, if your doctor recommends fusion, what should you expect?

There are many different approaches to the procedure, but generally speaking they use metal devices to hold the discs in place while pieces of bone are put into key places. After about nine months (plus or minus three) the discs should be fused and the metal can be removed or left there if there are no problems. The bone fragments used can be taken from your hip, but often the hip wound is worse than the back wound. A less painful alternative is to use bone from a cadaver. It sounds gross, but can save a lot of pain and maybe even result in a faster recovery.

A new method of spinal fusion called Minimal Access Spinal Technologies or MAST uses a less invasive procedure which shortens the rehab time.

What you can do.

Do all you can. Your doctor and physical therapist can help you, but you have to know yourself and you have to do the work. Most of us can't do aerobic exercise, and strengthening our good muscles just adds to the unbalance. That leaves diet, stretching, balance training, and assistive devices.

A diet that's low in calories and bad fats, and a little higher in protein seems to be working for a lot of PPS people.

Non aerobic exercise and stretching in warm water are very helpful. In fact it may be the best active management tool available. Although the heart/lung and bone health benefits are much less than weight baring exercises such as walking, running, cycling, and strengthening exercise, water exercise is extremely beneficial. To prove it to yourself, go to a spa or health club that has a pool with the water temperature approaching (but not exceeding) body temperature. Float around, move your arms and legs gently in all directions paying attention to the tight muscles. Don't over do it. Just relax and enjoy the weightlessness. See if you don't feel better and look forward to doing it again.

{Mechanically speaking, your back is right in the middle of your body. Stretching any tight muscle can take stress off your lower back.}

There are two areas of balance to work on: emotional and physical. Yoga, Tai Chi, and similar programs are good approaches to physical balance, but generally aimed at people without our strength issues, so it's up to us (and our doctors and therapists) to use whatever elements of that type of program are fitting. Proper breathing, relaxation therapy, positive spirituality, self improvement, and so on, serve to balance the physical and spiritual. We can do these things.

When the body is not willing and able, a little assistance may be in order. With so many forces applied to your lower back (See diagrams) it's no wonder we have problems. A back brace, shoulder braces, leg braces, and shoe lifts can help keep things aligned and balanced, but the most useful tool could very well be a power chair. With proper seating and minimal bracing, we can take the pressure off and give the back a chance to rest and heal itself while saving energy.

In the art of story telling the author aquatints us with each character by telling their back story - what happened before this moment that made this character who they are today. The characteristics of your back are the result of what went before. Although it's true that we can't change the past, we can change tomorrow's past by changing today. Stretch, lose weight if possible, practice balance, learn to properly use all the assistive devices available. If the damage is done do everything you can to prevent it from getting worse and it just might get better. It happens all the time. If it doesn't and your doctor recommends fusion, don't let fear of the unknown prevent you from being the best you can be. Investigate, learn. Knowledge is fear's adversary.

_____________________

What PPS/fusion patients say

I polled my PPS e-mail list to ask fusion patients to tell their stories.

Among my many, many surgeries were two lumbar spinal fusions. They were done when I was about 11 and 13 years of age. The first involved a complete body cast and I remember I was in so much pain and most of the time, flat on my back on a hospital bed in the hospital and later at home. I couldn't go to school and I had the cast for a year. (They might have redone the cast during that time, I can't remember.) The second surgery was a surprise to me and I was very upset. This time I had a turn-buckle body cast but I could walk. The cast was heavy and bulky and I had to get large-size dresses to fit over the cast. Because my school had stairs and inclines, I had to go to a school for the disabled for a year. I suppose the positive is that I have less scoliosis than I would have had but I do still have scoliosis.

I am pretty sure I had 12 discs fused and it definitely was done with bone chips, not rods (not even sure there were rods back then). I can move well because my upper body can turn. You know I went through cancer treatment all last year. I had more back pain during chemo than my friends going through the same treatment, maybe because of PPS. I thought this year would start out great but they put me on a drug to keep estrogen down (Arimidex) and I had severe reaction to it--bone pain and really bad swelling, stiffness and pain in my hands and arms. Am I overly sensitive or does PPS have something to do with it? I was worried I wouldn't be able to do miniatures anymore but I've been off the drug for almost a month and most of my side effects have gone away.

Ann Johnson

----

My wife Grace had spinal fusion's, and was in a turn-buckle cast at a hospital in Los Angeles, when she came down with Polio when she was about 10.

Later, a few years ago, she developed scoliosis, and had to have additional surgery and more fusion's. This time a Harrington Rod was inserted, to hold the mass in place while it healed. During this surgery, some non-unions were found that had been missed. Dr. Risser, of the "Medicine of the 50's" fame, was the original surgeon.

D. Terry Huff

----

After many years of putting off surgery I am now seriously considering it.

I am have serious radicular pain and numbness that is not going away. I have an unstable back. The spine is slipping forward from the sacrum. It is a grade 3 Spondo. I am going to see a spine specialist at the Uof W in Seattle ...

I recommend that you visit the Uof W web site. It is very informative.

I have represented many clients who have had lumbar fusions and the results are mixed. Failed fusions, problems with the levels above and below the fusion plus problems with scar tissue are not uncommon. The technology has improved considerably over the years but the orthopedists I know are doing fewer of them than they did years ago because of the poor results.

There is a study out of the mid west or the east that questions the efficacy of back surgery. I don't know if they differentiated disc surgery from fusions.

My surgery is going to be the most difficult. It will require rods,plates and screws to stabilize the back. Most fusions are at L-4 L-5 . They will use donor bone from the hip or cadaver bone to fuse the two vertebrae together. Seldom will they use hardware at that level. Titanium gages are being used in the cervical area but I am not sure if they are being used in the lumbar area.

I think most of the questions you asked will be answered by the hand outs from a Spine specialist office.

I know that age, employment, weight and health of the patient will impact the results of the surgery. Also the talent and experience of the surgeon is crucial.

Art Swanson. polio at age 14. I am 69 now..

PS: Also, an anesthesiologist told me that Polio victims should not have a spinal.

----

I have not known many folks who have had lumbar fusions. Most have had cervical or thoracic. The age of the person seems to effect length of recovery. There is always a risk that the bones will not fuse properly and smoking increases the changes of a fusion failure. Recovery in general for the surgery part is the usual 6 to 8 weeks but it is at least 3 and up to 6 months or longer for complete fusion to take place. The older the person , longer it takes. If one has diabetes it will take longer. Always risk of infection as with any surgery but doesn't occur much from my 30 yrs. experience as nurse. I also worked in rehab a few years with mostly back injuries and fusions.

Pain.....yes, one does not consider surgery unless there is severe pain or loss of function due to spinal cord compression. Post operatively will have a few weeks of pain but it shouldn't last long. The first 3 days are the hardest.

The fusion may well result in some limitations in movement.

Here is a good web site to read some additional good info. Hope it works for you. http://www.spineuniverse.com/displayarticle.php/article600.html

Negatives might include limitations in movement. Pain may not be relieved. Infections can occur or failure of the fusion all together.

Positives could be relief of pain and relief of spinal nerve compression and return of normal function decreased due to neurological problems.

Yes pain meds for several weeks postoperatively is common. After a period of 8 weeks or longer, once fusing is taking place, physical therapy will be initiated and home program too. Important to do the exercises given.

My friend who had a complicated cervical fusion last summer did take pain medicine for about 6 months, was slow to fuse but is doing great now. She is a diabetic, with heart problems and 69. So overall she is doing good. Others recently I have known were great in less in 3 months. So age really matters and the extent of surgery and location makes a difference.

Linda Dempster

----

I had 3 spinal fusion's, but they were in the 70s (two at Rancho Los Amigos) and I understand things have much improved. I was in a body cast for a year, twice. There were complications from the first two surgeries, thus the third.

The first two surgeries were two weeks apart. I was under for 71/2 hours and they decided to complete the fusion two weeks later. I was on a stryker frame and was rotated every four hours. If it was meal time, I had to eat upside down. After two months in the hospital I came home, but the pain was so bad I had to return. Before the first two surgeries, I was walking unassisted. But, when the cast came off a year later, I couldn't stand upright (they had torqued the rods in my back), and had to use a crutch. Two years after the first surgeries, I went to Minnesota where Dr. Moe (famous in his field) redid the fusion. Another year in a body cast! I still could not stand completely upright, though I was much improved, and had to continue with the crutch.

Harriet

----

My husband was 14 yrs. old when he had his spinal fusion and he is 65 yrs. old.

He got polio at age five. He has been very lucky to be stable and strong even thought they left his back very crooked.

I had mine as an adult and because of my brittle bones have had many back

surgeries (9) with the last one being a success.

Surgery was painful, but quick healing and was glad the last one took.

I did have mine done in Fountain Valley.

After recovery, movement was not hindered or painful like I felt when I had so much pain pre-surgery. Driving used to cause a lot of pain. Sitting was not possible for long periods of time. Laying down or standing was less painful, but different kind of pain.

Of course I would hate to do this surgery again, but if need be I would. I know when we choose surgery it is because we hope for relief. I was able to do much more after a fusion than I was able to do before. Robert the same thing. He was able to do lots more.

Alma Parker

----

I have had six spinal fusions, four of them in the lumbar region. I have rods, hooks and screws in my lumbar region.

I have found that attitude plays a big part in a persons recovery as well as a persons body condition before they have surgery. My recovery was slow but steady and my attitide was very positive. I was studing to be a Feldenkrais Practitioner and had a lot of support from family,and friends,as well as everyone in my class. All that good energy made my recovery much easier.

Some of the long term negatives are scar tissue, nerve damage and the possibility that part of the surgery didn't work and could cause more problems.

Some of the positives are that I am out of pain and can resume my normal activities such as walking, yoga, spinning classes, golf , horse-back riding, I think I'll pass on the skiing, and doing some of my Feldenkrais.

Pain medication is something I took very little of before the surgery and during recovery and I do not take any now. I work with a Holistic M.D. and have been lucky enough to be able to tap into a part of my mind that could keep me above most of the pain. When I could not I was able to find some remedies that worked for me.

Sandy Gordon

----

In 1974 I had low back fusion surgery. I had a part of my hip bone cut which was very painful, for the fusion and I understand that procedure is much different today. Recovery was long 2 years on disability. First six months I was housebound. During that time I did therapy light at first then progressed to moderate. I took pain medications for almost two years. Long term negatives: I will always have a sensitive low back, which is sensitive to cold. I will be taking pain medications for the rest of my life. I am, however in better condition than before the surgery and I am happy I decided to have the surgery.

I also have a close friend who had lumbar fusion just over a year ago. Her

recovery was very fast. I understand there were pins inserted and she seems to be very satisfied with her surgery.

Joe Camaya

INDEX

BARELY BREATHING

By Rick Van Der Linden 10/03

We all know that polio weakened our muscles. Usually we know which ones suffered because we are left with specific weak areas. We are true survivors, though, and we learn to compensate for a bum leg, for example, by shifting the load to the other leg or to our arms.

But, what can we do if a weak diaphragm and/or weak chest muscles leaves us barely breathing? We may not even be aware of it until serious problems arise.

Come Back when You Have a REAL Problem.

You're driving your car. You hear a funny noise, feel something strange - is it losing power? Just in case, you go to the auto repair shop. But when you try to explain the problem to your mechanic you get this quizzical look from him. He has you start the car, listens and looks, prods and tests. He looks a little confused when he says he can't find anything unusual, the engine is running within acceptable parameters. He suggests that you come back if it gets worse. At this point you start to feel stupid. Is there a real problem, or did you imagine it?

So, you drive away. And you think, "Well, he's the mechanic. Who am I? Just a crazy old coot running around in silly-acting car. I'll just lighten up on the gas pedal and maybe it'll go away."

Months go by and you think that maybe you still hear a funny noise but you've gotten used to ignoring it. After all, it's probably just in your head and you don't want to risk further embarrassment by going back to the mechanic.

Then one morning you start the car, back out of the driveway, head for the freeway. Minutes later you turn onto the onramp and hit the gas. You're accelerating to reach freeway speed - 30, 40, 45... - the engine starts chugging and loosing power! The world around you seems to be moving at a breakneck speed and you can't keep up. Now you have a real problem.

Like your car, your body runs on an internal combustion engine. To remain functional you have to take in fuel and air to create the fire while at the same time throwing out the ashes. To function normally, this amazing machine has to 1) maintain operational temperature 2) provide power for control devices, and 3) do something.

My problems started 50 years ago with polio. After a short recovery, it left me with a few weak muscles, but that was all. It wasn't until 35 years later that the problem came back and eventually saw a doctor about it. Pain in my hands, arms and shoulders were limiting my ability to function normally. It's not arthritis, doesn't seem serious... come back when you have a real problem.

I modified my lifestyle and things worked out pretty well for a while. Then, on that fateful day in the spring of 1993, the weakness in my arms caused a serious fall. Yeah, I went back when it got worse. Went back with my bell rung, broken bones, shinned up all over. After a minor patch job and a year of recuperation I was back to about 50% but declining. Now it was more than upper body, my legs were involved.

By this time I had heard about PPS and went to the clinic. Yes, I had PPS. I could barely walk and my knees were hyper-extended from knee locking to avoid falls. I needed braces.

Fortunately, I'm not against using whatever's necessary to be my best, so six months later I had two short leg braces. Early action had saved my knees and/or hips from ruin.

A real pain in the neck.

Although the main focus of my treatment was my walking difficulties, throughout my clinic visits my main complaint was that it was painful to hold up my head. The muscles in my neck and shoulders burned and I had to rest my head frequently to keep the pain bearable. I tried a soft collar and a figure eight brace but it didn't seem to be enough. What can we do about it? When the doctor said that when it gets bad enough she could fuse the disks in my neck my eyes must have bugged out of my head as I asked, "Isn't there a way to prevent that?" Well, we could do a back brace with a head support system. That might delay the inevitable.

So, a year or two (and a couple of insurance changes) later I finally got a back brace with a removable headrest. I had already taken steps to save my neck muscles by getting a custom headrest in my truck, a high-back chair for my desk, and a high-back recliner for TV and reading. I was also careful to not get stuck in a waiting room situation where I couldn't lean my head on the wall. I keep the removable headrest handy just in case I get stuck in a bad situation. Another bullet dodged.

Take a Deep Breath

Well, here I am again. I've been hearing this "funny noise" for twelve or more years. I ignored it at first, tried to overcome it, and ran from it, but it finally caught up with me. Post-Polio weakened breathing muscles had been dragging down my entire body. So, boldly I go to the doctor and, after sleep studies, blood tests, pulmonary function tests and such what do I hear? "You're numbers are not bad enough to warrant treatment." Come back if it gets worse.

Well, no matter what my numbers are, I had to do something about this problem before it was too late. I'd heard stories from other polio survivors about multiple hospitalizations for respiratory arrest, bouts with pneumonia, tracheostomies... I don't want to go there.

My pulmonologist, bless his heart, had been trying. He put me on inhalers to clear up the chronic cough. My sleep studies showed mild sleep apnea and he went to bat to get me a CPAP machine. Not the gizmo of choice, but my breathing was so shallow that it was better than nothing. Come back when it gets worse? Well, you're the doctor.

A month later the inhalers ran out and it started going bad again. The CPAP was not enough pressure when set at low pressure, and too much pressure when set higher. Most of the symptoms of breathing insufficiency continued including the cough, daytime mental and physical fatigue, weak voice, shortness of breath, morning headache, snoring, depression, burning muscles, indecisiveness, ten or more hours in bed every day - the list goes on. Not really worse, but certainly no better.

I'm a Bad Boy.

Research and interviews with BiPAP users had almost convinced me that nighttime ventilation was the right thing for me, but I was plagued with doubt. Should I wait until it gets worse? I think not. My research suggested that early use of BiPAP would not be harmful, so I borrowed a BiPAP machine.

Before we go any further, I have to include a disclaimer. I do not recommend that you treat yourself. A doctor is needed to eliminate other possible complications and to oversee the proper use of prescribed drugs and/or treatments. Also, the borrowed BiPAP is generally not a good idea because it has been set to the owner's specifications and may not be suitable for you. But, I was afraid of what would happen if I didn't do something quickly. I was drown