CHAPTER ONE

ABOUT PATIENTS AND PHYSICIANS

ONE PATIENT, THE AUTHOR:

John Pageler, that’s me. I live with my wife Barbara in Pinellas Park, Florida. For sixteen years I owned and operated health food stores in and around St. Petersburg, Florida. I’m not a doctor, nor a scientist. I have no long list of important-sounding academic credentials to make my words ring with authority. I am what is commonly termed a layman. But I have two great advantages over the scientists and doctors who usually write about Multiple Sclerosis. First, I speak from intimate, first-hand knowledge, because I am an MS patient myself. Secondly, I have kept the disease under control since it was diagnosed twenty-one years ago.

Those of you reading this who are not afflicted with the disease may wonder why I have spent so much time and effort telling about things other than the nuts and bolts of the diet and supplement program I use. I ask your indulgence. This book is not meant to be a quick answer for the curious. It has been written to try and help MS patients get a handle on their problems. Problems which no one really seems to be able to understand, not the least of which are the professionals of traditional medicine.

Every MS patient I have come in contact with over the years has, more or less, had the same questions and concerns to ask me about. This book is my attempt to answer them all, to the best of my ability. Questions such as: How long have I had the disease? How did it affect me before diagnosis? After diagnosis? Why did I start on this particular program instead of some other and what made me keep on with it when quitting would have been so easy? Should we patients quit smoking? Drinking alcohol? Do I really know what caused me to get the disease? Do I really know how and why I kept it under control? What do the doctors say about what I’m doing? How has my having the disease affected my family life? My marriage? My children? My work? And female patients usually want to know if pregnancy will bother them.

These are all legitimate questions. I had the same worries and questions when I was diagnosed. In fact, I think any question an MS patient has is legitimate. I have tried hard to address all of these concerns. Some of my answers are frankly guesswork and I readily admit to that. But the bottom line remains the same; Guesswork or not, I have the disease known as Multiple Sclerosis under control in my body. It doesn’t control me. Sure, I have to follow a strict regimen, but so do most people who are successful at anything. Particularly if that “anything: is physical in nature.

Much of this material is unavoidably autobiographical. Not that my life is all that interesting, but perhaps it will help other MS patients to understand why and how I chose to do the things I did, rather than follow a different path. Most of us with MS want to compare our experiences, our thoughts and our feelings with other patients. Those of you who prefer to get right to the heart of things might like to skip to Chapter 7 after you finish this chapter and by-pass all the autobiographical parts.

But perhaps some MS patients will be able to recognize some aspects of me that apply to them in my story. Most of the information you read in this book I have personally experienced. A few of the things have been related to me by other patients. But because of the strange bond that humans who share the same misery seem to have, I feel as though I can almost live their experience as well.

This book should have been written years ago, but because I was afraid that what I had to say would be tainted by the commercialism of my owning health food stores that sold the products that I advocate using, I waited until after we had gotten out of the business before I attempted to write it.

(Now in 1988 I find myself back in the health food business. The chances for an MS patient over 50 to start over in a new career are very limited.)

Please, if you are an MS patient at least read what I have to say because remember, I’ve been there. To most of the professionals trying to give you advice, MS is an interesting phenomenon that they study with detached interest. Then at the end of the day, they go home and forget the fact that we have MS.

THE PHYSICIANS

Multiple Sclerosis was first described in 1838 by Sir Robert Carswell. Since that time, 150 years ago, the disease has been under almost constant scientific investigation.

The well-intentioned and learned scientists and doctors of the National Multiple Sclerosis Society, as well as others in the academic world have been working hard to find out more about the disease. But So far, Multiple Sclerosis is a disease with no accepted treatment. It even defies the scientists’ attempts to find out exactly how the disease mechanism works, let alone their attempts to find a cure for it. It is not for the lack of effort that they have been unsuccessful: after all, they spend millions of donated dollars every year trying to find a cure.

They would surely like to help the patients. It is just that none of them has been able to figure out how to do it in a predictable, provable way. The scientists and all the rest of us are sure that, in time, a cure will be found. But the simple fact is that in the 150 years, an after the untold millions of dollars spent since MS was first identified, not one single thing that is helpful to the patient in overcoming the effects of the disease has been scientifically accepted. Not one!

Being a scientist or a physician studying MS does not necessarily qualify a person to work with MS patients. Science is not always sympathetic to the human needs of patients. I don’t believe that anyone who has not experienced this, or some other “incurable” disease himself can know the feelings of fear, frustration and horror that we patients live with each day.

Frustration usually starts long before the diagnosis, as we begin to lose the ability to do things that have been second nature to us. Then comes fear, as our troubles get worse and we have no reason, nor even a name, for our problems. Until horror takes over, when we are finally told that we have MS> For some of us it all comes together as abject terror when we learn that MS is incurable and that there is no acceptable treatment for our problem. This climate of terror is what the doctors and researchers can find themselves faced with when they are working with MS patients. And frankly some of them don’t handle it well.

Being scientists, they look for proof of this and proof of that before they will take the next step. They have the luxury of time to make sure they are right in every way. So, while the scientists hypothesize, critique, experiment, modify the hypothesis and experiment some more just looking for enough scientific proof to take Step A and then start the whole procedure all over again for Step B; the MS patient is trying first this “cure” then that one in a desperate hope that something will help him.

When a doctor, in his scientific wisdom, tells a patient that he should not try to help himself by using his own body as a testing lab, I believe that doctor is probably wrong. As patients, most of us need to be doing something that we think might help us. Many of us cannot just sit there and do nothing while our bodies deteriorate. We feel we must be involved with our own destiny, no matter what the accepted medical wisdom tries to dictate.

TIME IS JUST NOT COMPATIBLE WITH TERROR

How can anyone else, even the doctor who takes care of us, truly understand an MS patient? No one who has not had to sit on our side of the physician’s desk can ever adequately understand the feelings that overwhelm us when that respected man in his white coat tells us that he is sorry, but life as we have known it is over and there is absolutely nothing we can do about it.

Even though we know that his diagnosis is true, we usually try to deny its reality, even to ourselves, because with reality comes the terror. But soon, new and usually more severe MS symptoms start and denial becomes less and terror becomes greater. We MS patients see our lives slowly crumbling around us from an unknown cause, which has a name, but no substance.

I was never ever diagnosed as having MS until I had the horror of sudden functional blindness. Later, I was accused of drunkenness by friends and fellow workers, because I was unable to walk a straight line or speak without slurring my words. And then the greatest indignity of all – standing in front of a group of people and suddenly feeling a spreading wetness over the front of my trousers and the urine running down my legs and filling my shoes as I lost control of my bladder.

Into this turmoil of mind and emotion comes a haughty, owl-eyed physician looking over his spectacles with a superior stare telling me he does not want me trying any unproved therapies, but that he expects me to just wait until a proven therapy to his liking is found. “To his liking!” “Like hell, I’ll wait!” “I want help, right now!”

Usually the things that we patients hear about have helped some patients somewhere. It is just simply not true that no one ever gets better. It is true that the disease, many times, follows a roller coaster pattern and it is difficult to tell when someone is in a long remission and when they are getting permanently better. “Wait for a therapy to be found that is to his liking, indeed! I’m getting well without him, thank you, and damn glad of it.”

WHY QUIBBLE WITH WORDS?

As an MS patient I don’t really care what you call it; remission, cure or control. If my symptoms get less severe and don’t return, that is all I really care about. Most of the unproved therapies will not do me any actual harm and the rationale for trying them is so simple. If it helped Joe Blow, why not me? So what if the thing I’m doing is not a proven therapy and won’t help every patient? Maybe it will help me and “me” is the one I’m really interested in!

So we patients, in our frustration, are going to try some of those unproved “cures” behind the doctors’ backs anyway. After all, the doctors can offer us nothing to help at this point and until they can offer us something concrete, we are in a wilderness of fear and frustration on our own.

But, without the doctor’s careful monitoring, some patients will carry trials out too long and too far; hoping that things will change long after any chance for change has passed. On the other hand, sometimes improvement might come about that only the doctor’s testing could detect. The tests could show that the patient is on the right track. However, without the doctor’s guidance and encouragement, that patient might give up too soon.

I believe that doctors working with MS patients should look at every hope their patient has, and if that hope does not involve anything that will outright harm the patient, then work with him instead of denying or ridiculing him. But the doctor must be very careful how he acts and talks about any specific therapy the patient is interested in trying. Patients very quickly become sensitive to the thoughts and feelings of others, particularly if they are “experts” like doctors.

A doctor is trained to find an invading germ or virus as the cause of disease. But what if the doctors are wrong this time and the cause is just something unrecognized within the patient himself that is simply different from other people? If tat turns out to be the case and the patient is reacting to things in the environment that very few others react to, the doctor might easily discourage a patient from giving something a fair trial that might help him. Just because the doctor, in his allopathic experience, doesn’t think a specific program is going to help, if he has had no personal patient experience with it, he should not deride it. His own bias might be keeping this patient from dedicating himself enough to show improvement.

Perhaps, as long as the patient is supervised by a physician, the medical attitude toward an unorthodox MS therapy should be that it should be just as provably harmful to be discarded as the scientific community wants a therapy to be provably helpful to be accepted. That way, at least, some unorthodox therapies could be helping some patients right now instead of every patient being expected to just accept their fate until that 100 percent provable therapy is found.

Most of the diet therapies, in particular, have been helpful to some patients. There is no reason for a doctor not to assist his patient by keeping close tabs on him through blood tests, etc., and who knows, it might be that specific diet that will work for that specific patient. And after all, where should a physician’s loyalty be: To blindly follow the ultra-conservative, accepted medical ideas, or to try his best, by every means available, to help his patient overcome the disease?

I would have been glad to sign an agreement holding a doctor blameless and free from malpractice suits, if I could have found one to work with me. I think many other MS patients would also be willing to try new things and hold their physicians blameless if it didn’t work out. And having a doctor who didn’t really believe in what I was doing and who was critically watching my test results, could have been an advantage to my long term safety if the program I had been following had been a dangerous one.

As it turned out, I was perfectly safe in what I was doing all along, so it didn’t matter that most of the time I had no regular testing schedule. But because I had no physician to record, in a scientific way, my progress with the program I used for myself, there is now nobody of scientific record for other patients to follow – only this book. To me, that is the real shame of not having a doctor with the courage to work with me during all these years.