Because I, myself, was diagnosed as having multiple sclerosis in 1967 and re-diagnosed as having MS 8 different times by the VA over the last 21 years. The last time being December 1988. I was also diagnosed as having MS by a Post Office contract physician when I briefly went to work as a rural carrier in October 1986. As a fellow patient, particularly one who has reversed the disease in his own body and who now plays at tennis, after using a cane and braces for several years, I feel that I have as much or more right to address you than my “expert” whose only real experience with MS has been as an observer.

We will try and accomplish 3 things this evening:

(1) For the family and friends of the patient, we will hope to gain a better understanding of the MS patient. Not sympathy. MS patients don’t need sympathy and certainly we don’t need pity, but we need understanding from those around us.

(2) For the patient, a better understanding of ourselves. It’s time to stop running around screaming that the sky is falling. That just doesn’t help. And besides, the sky is only falling for us; no one else can see it. The more we cry Wolf, the less seriously other people will take us.

(3) I will outline for you what I have done about my own case of multiple sclerosis and how I’ve done it. I will encourage you to try and do the same or something similar, but I will not deride you if you choose to try and follow a different course.

The only way I will look down on any MS patient is if that patient gives up on himself and just does nothing. Any MS patient who simple waits for someone else to do something like invent a magic bullet that will just take his disease away is a loser and probably does deserve pity.

I’m talking directly to each and every MS patient within the sound of my voice now, so please hear me clearly. Do not, I repeat, DO NOT listen to the nay Sayers, those prophets of doom who tell you that you can do nothing to help yourself. That is just plainly not true.

It is very true that accepted medical science, as we know it today cannot help us. So don’t look to the MS Society for help, or even to your doctor. They can’t help you. Even I can’t help you. Oh, I can present a plan of action to you that helped me and which I believe will help you as well, if you follow it! But it is up to you to do it. With knowledge and understanding you can help yourself. But no one else can do it for you. Only YOU CAN help yourself.

We will get to all that in a minute, but for now let me address the other people who are just as involved with your disease as you are.

Let’s start with the family and friends of the MS patient. How many of you non-MS patients here tonight have ever been in honest fear for your life, or even worse, in real fear of being maimed? I mean the kind of imminent fear that causes the hair to stand up on the back of your neck and the adrenalin to shoot through your body ‘til you almost have to scream just to relieve the tension?

Those of you who have actually been in a firefight combat situation in the service, or who have crashed in an airplane probably can relate to what I’m saying. Maybe if someone here had polio as a child, or has been diagnosed with cancer or some other so-called “incurable disease,” that would probably be a similar feeling. Most of us who have been in traffic accidents cannot really relate to this type fear because accidents usually happen so fast that we don’t react ‘til after it’s all over and by then we know we are still alive.

What you as family and friends must understand is that the MS patient is in a very unique situation. He has that fear for his life or at least the quality of his life, not just momentarily while the shells are going off around him or as the plane dives for the ground, but all the time, day in and day out. MS is not static, what a patient can do today he may not be able to do tomorrow or next week so the fear is always there.

All of us meet and evaluate the people around us every day. There are all kinds and classes of people. Rich and poor, weak and strong, pretty and plain. Our senses and intellect allow us to relate to them all questioning, evaluating, accepting or rejecting each on his/her own merit. All, that is except one class of people that we have separated and raised above all the rest. We call them the Physicians. This seems to be a class of never questioned, unapproachable, almost God-like super human beings in our society.

Remember, a doctor, one of these totally respected, even revered men, has given this person whom we call an MS patient a living death sentence. This human being has been assured that he does not even have the same chance for an appeal that the convicted murderer on death row has. He has been told that his fate is already sealed and it is a fate without any hope. Not even the hope of a speedy conclusion by death because MS doesn’t kill, it only debilitates. And therefore the MS patient’s fear is present all the time.

He has the constant physical reminders of his fear in the loss of body motor functions. He feels it whenever some new body function goes haywire. And he knows, because he has been told by the respected doctors that the disease will never get any better, only worse.

Yet he can remember the times when he could run and play, because after all he wasn’t born this way. It just happened to him as a young adult. It probably came on after marriage and his family had gotten started, when life was just opening up like a beautiful flower before him.

Then came the first unknown problems. The loss of balance, the sudden blurring of vision, the words that seemed to twist in his mouth and come out in strange garbled fashion.

“My God, what’s happening?”

Then the medical examination and the words that bring the fear, “I’m sorry, but we believe you have multiple sclerosis, an incurable, progressive, debilitating disease.”

“What? How? Why?” The questions trip over each other demanding answers, but no answers come. No one know the what: Or the how: Or, even, the why. At the same time the patient knows that none of this is his fault. Somehow, for some unknown reason he has just been singled out to carry this cross of physical deterioration.

How does he deal with it? Who does he blame? Usually he first raises his fist in despair and curses God. “Why me! If you take this illness away I’ll change, become a better person, change my life, anything!” But no matter how vigorous the fist shaking or how bad the curses, they don’t take the terrible burden from him.

So who does he turn his blame on the, who does he scream at in his frustration? That’s right, on you, his friends and family. Not because he thinks you can change anything, not because he believes you are really to blame, but simply because you are there with your bodies whole and undamaged. In many cases the patient experiences a complete change of personality. The sweet person you love becomes someone else. By hurting you he can make you share some of his mental pain and frustration.

I am not condoning this type of action, or excusing the actions. But I understand the reaction. I’ve been there. I’ve done my share of creaming and hurting those closest to me. But, I also know that if the family and friends can ride out the storm of anger and frustration; by allowing for it, expecting it, ignoring it, that this phase will work itself out in time and tranquility will return.

The human heart heals and with the healing…the hurt and the anger are moved to a back burner. They don’t go away, they just become a low level ache like a once upon-a-time broken bone on a blustery winter day.

Sometimes family and friends just naturally go with the flow and the storm passes them by. But all too often, without really understanding why the patient acts as he does, they find themselves so wrongfully abused by the MS patient in their life that they break. They respond to the abuse with a growing hatred in their own frustration. When this happens we really get into a bad situation.

On the one hand we have the physically impaired MS patient, sometimes so limited that he can’t really fend for himself and in need of the help and love of his family more than anything else in the world. On the other hand we have the family so turned against the patient by his own actions that they are they give is not the loving care and encouragement needed, but rather coldly begrudged half-hearted care. The rest of the family feels trapped because to abandon such a helpless patient is against all Christian teachings, while to care for them is a hateful experience.

What to do, what to do? If you find yourself in, or approaching this situation, you need to get professional help. Quickly. Ignore the expense. This is a critical situation, which could emotionally scar everyone involved for life.

Hopefully most of us never reach such a critical stage. If the family can realize and recognize that the patient is just striking out blindly in his frustration, then the family in their love and understanding can calmly work through this period with the patient. Maybe they can even forgive without bitterness. But everyone must take an active part in working it through. Nobody gets to sit on the sidelines and just watch the game, everyone is a player whether they want to be or not: the patient, the parent, the spouse, the children, the coworkers, the friends, everyone.

Multiple Sclerosis or any other disease is a tragedy for the whole family. The difference in MS is, if you listen to the representatives of traditional medicine, it is slow acting and progressive and there is no hope of reversing it. This is no place or time for anyone to take the macho role and try and deal with the problems alone. It needs a total family effort.

Sometimes I’ve heard family members say, “but why should I put up with abuse. I don’t deserve it.” To which my reply is always, “why should the patient put up with multiple sclerosis, he doesn’t deserve it either. The difference is he doesn’t have a choice. It found him and attacked his system unbidden, but he can’t walk away from it. He can’t just quit. He has to live with it the best way he can.”

The family members at least do have a choice. Not a happy one to be sure, but nevertheless, a choice. If they really want to, they can always walk away. But if they do, then they may have a burden of guilt just as heavy to carry as the physical burden of the patient they walked away from. It is always best to try and face the situation together: as a family, right from the very beginning. With understanding each can draw strength from the others.

Now let us turn to the MS patient himself and see if we can give him some understanding of his situation. The first thing a patient must come to grips with is that he is out there in a great-uncharted wilderness all alone. No matter what anyone tells you, nobody understands this disease. No one. Not your doctor, not the MS Society, not the researchers. You are the only “expert” that really counts when it comes to how this disease affects you.

Screaming, gnashing your teeth, cursing God, running around yelling that the sky is falling, asking your doctor or the MS Society or your Great Aunt Mini what you should do all have about an equal value. None.

So it’s about time to get ourselves under control. I know it takes a great effort, but we have just got to reach down and grab ourselves by the bootstraps and yank ourselves up. We must get our emotions under control. Unless we do at least that much we can never cope successfully with MS.

We all know we didn’t do anything to deserve this problem. Grousing about it doesn’t accomplish anything, worrying about it doesn’t accomplish anything either. But, if we can take a long honest look at ourselves and at our limitations we can begin to learn to accept where we are and who we are.

We simply need to try and accomplish everything we can each and every day: to stretch and push against our limitations. But we also need to know when to call it quits and not try and push past our limitations and set ourselves up for repeated failures. That is the first step.

The second step is to start reading and studying everything we can get our hands on about MS. Don’t depend on someone else to read and interpret for you, if at all possible. If you do it yourself, the information will not be colored bye the prejudice of another person.

My search took me through medical libraries and health good store bookshelves. I’ve got copies of original research from allover the world, plus I’ve got books that have been written by people like myself who have had some success in dealing with the problem.

The most striking thing that leaps out at me from all this material is that nobody has been really able to scientifically prove anything about any specific cause or cure for this disease. You would think that someone, somewhere would have found a cause at least in the last 150 years, but nothing. We have come up with a big fat Zero! The researchers are still at square one trying to figure out what causes this thing.

There seems to be only one thing that every non-patient MS expert has agreed on and that is that diet cannot and I have to repeat that with emphasis. The so-called experts will tell you that DIET CANNOT have anything to do with the onset or the control or cure of this disease.

What is curious to me about all this unanimity is that there has only been one scientific study done on diet and MS and it is very positive. That is the study done by Dr. Roy Swank. Yet everyone of the MS experts not only totally discounts this work, they also refuse to do any other studies with diet to try and either confirm or disprove it.

Now isn’t that curious? No other research of any kind has ever shown any modification of the disease from the statistical model. No exotic drug, no surgical implant, nothing has ever modified the progress of the disease except diet and that is the one thing all the experts are dead-set against their patients doing. Why? That, friends, is a question to which I can only guess at an answer.

Here is my guess. But before I spell it out for you I want you to know that I am very angry at establishment MS medicine. In fact, if you remember the movie “NETWORK” well, “I’m mad as hell and I’m not going to take it anymore, “ from the establishment. I am fully aware that my next comments are probably colored by that prejudice.

That said, here is how I see it.

First, our government and the medical establishment have been saying for years, don’t worry about your nutrition. Just eat a “balanced diet” and everything will be all right. Well, in this enlightened age of the ‘80s, we all know that is a blatant falsehood. Yet it is the position held by an entrenched, conservative mindset that unfortunately sits in the seat of medical power.

Unfortunately it seems we must live with this unrealistic official assessment of our dietary life. The only areas in which diet is allowed to be important in medicine are outright malnutrition, overweight, diabetes and, recently some forms of heart disease.

In fact, diet and nutrition are so little thought of that they are not a major part of the curriculum in any medical school. Diet is just not a part of the mainstream thinking in American medicine. Let the nurses and dietitians worry about it, we medicine men are too busy with important things like miracle drugs, surgery and managing our financial investments.

And in truth, that is as it should be. Medicine, allopathic medicine (which is what medical doctors really are) is defined as the treatment of disease via drugs and surgery.

But why then do we allow the medical doctors who have neither knowledge nor interest in diet to become the official gurus of nutrition? If they don’t study nutrition, care about nutrition or believe that diet and disease are related, then why do we “the people” allow the doctors to have the power over official policy on diet and nutrition?

Don’t get me wrong. There have been great strides in the treatment of all types of disease with drugs. Right now there are literally thousands of people involved in MS research who are trying to find that miracle drug that will control MS. And I have no doubt that sooner or later they will find something.

However dedicated these researchers are, they are not philanthropists. They are getting paid the kind of money through greats and endowments that most of us can only dream about. It is almost like a big BINGO game. The more positive things they can get on their board the more grant money pours in and everybody know that someone, somewhere will get the last piece on the board someday and call out Bingo! Instant millionaire.

Human nature and the American way is to follow the rainbow looking for the pot of gold at the end. That’s free enterprise and there’s nothing wrong with that.

So back to the question of why the researchers don’t follow up on Dr. Swank’s work in diet and MS. I think the answer is simply that pot of gold. Diet and nutrition are in something known as “public domain”. That means they can’t be patented nor are they copyrightable. And no copyright or patent means no protection of the research investment and that means no grant money. No grant money means no wage and even researchers need to eat and have a roof over their heads.

Carrying things one step further, there has already been millions spent on MS drug research. If an unpatentable thing like diet is now allowed to surface as a viable control, then who will buy the expensive drugs when they are developed? No, I think nutrition research will come, but only after a drug has been found and the millions of dollars have been put in the bank.

That is the simple fact of MS life as I see it. If you listen to the “experts” you will never try a diet. Yet if you don’t use a diet like the one Dr. Swank advocates you will never modify the progress of your disease until after someone finally calls Bingo and that hasn’t happened in 150 years of research!

I don’t know how I can simplify my feelings any more than that.

I covered the whole area of research, theory and diet in my booklet; we won’t go over all that ground again here. What I promised you in the beginning was a quick outline of what I personally did, not only to modify the progression of the disease in my body, but to actually reverse it to the point that I can now do just about anything I want physically that other fat, out of shape, 55 year old American can do.

First, let me reiterate that I went through all the fear and anger phases that I talked about before. But I’m a skeptic at heart and a born rebel. I just would not accept what the experts told me about there being no hope. I was lucky enough to have Dr. Swank in the flesh to talk to and work with so thumbing my nose at all the other experts was not that difficult for me once I decided that diet was the way I had to go. For you, it will probably be more difficult.

The Swank diet is a very low saturated fat diet. It isn’t easy to follow, but it must be done totally and at all times. It is hardest in the beginning because it means giving up many of our (or at lest my) favorite foods. No nice crisp bacon, or French fries, or donuts. No butter or margarine, pizza or hamburgers. Not even any whipped cream or cheese, glorious, cheese! But according to Dr. Swank it is a clear choice between diet and disease.

I suppose the actual fact was that I was too stubborn, or too stupid or most likely just too scared to give up. I had seen MS before in my own family and after I was diagnosed, I saw others all around me with the disease. I just decided there had to be something that I could do. I wasn’t going to tolerate being an invalid even if it meant suicide. And that really scared me.

So sticking to the diet was the easier of the options. The longer I was on the diet the better I felt. Not that the disease just disappeared overnight, I still had MS attacks, but I seemed to come back after them much better than the doctors seemed to think I would.

Then I got lucky. I had the opportunity to go into the health food business. And through the people I met in the industry and what I was ale to learn about my body and how it worked, I kept getting even better and better. Sure, I take a lot of nutritional supplements, I am in the nutritional supplement business and I believe in how much they help me. If I didn’t believe, I would not have stayed in the business for almost 20 years. Positive thinking, diet and the supplements only flies in the face of the MS experts.

From the number of brain plaques the MRI shows I should be at least in a wheelchair by now groveling at the collective feet of the MS society and the doctors. But as you can plainly see I stand on my own two feet and thumb my nose at them instead!

Damn it! How can these holier than thou experts say that diet “can’t” help people with MS? How can these so-called “healers” these “physicians to the sick”, sleep nights when they so deliberately mislead MS patients?

A few months ago I was at a convention in Philadelphia where I was autographing my book. I met a truly wonderful medical doctor by the name of Bernie Siegel who was autographing his new book, Love, Medicine & Miracles, in the same book dealer’s booth.

He is what can only be termed as a maverick medical man. A surgeon who deals mostly with cancer patients, he has seen the heartbreak and literally thousands of families where one member has the deadly disease. Yet his book is full of hop. He has chosen to focus on what he terms the “exceptional patients.”

The exceptional patients are always the most difficult from a traditional physician’s point of view. They are the ones who refuse to blindly follow medical orders like sheep. They continually question their doctor’s decisions, they read and make suggestions about their own treatment and they never give up hope no matter what the prognosis.

They take the responsibility for their own lives; they don’t abdicate it to their physician. And most amazing of all, they are the survivors. They are the ones who are discharged from the hospital after amazing spontaneous remissions. The “exceptional patients” are the ones you read about who send their doctors greeting cards on the 1st, 3rd, 5th and 10th anniversary of their medically predicted death.

I guess I’m lucky enough to be one of those he describes as “exceptional patients,” a survivor and one of my proudest possessions is an autographed copy of his book. So that is the way I have approached my battle with MS and maybe it will help you as well.

I refused to accept MS as an incurable disease. Then I decided that I would help myself by believing in Dr. Swank and his diet, not just because he was a doctor, but because what he said made sense. And I was able to read the research for myself and in data he has to back it up.

I found it hard at first to fly in the face of the experts and tell them I was going to follow Swank’s diet and refuse their cortisone shots and any other medication they might want to try on me unless they could prove to me by research as convincing as Swank’s that it would help me. Before I just arbitrarily went with Swank I first asked the other doctors (and still ask every doctor I see), if he has a sure fire cure for my MS.

Up to this point the answer has always been, “no.” Next I tell him I am controlling my problem in my body with the Swank diet and supplements. This usually brings on a tirade, which boils down to “ what you are doing is crazy, it CANNOT control MS.”

My answer to that is then please explain to me why my disease has gotten better instead of worse. That usually brings a shrug and a dismissal. It is a rare occasion when I’ve found an “expert” who will discuss the whole thing with me in a calm, rational way.

When pinned down these experts always admit that they have never personally read Swank’s work, but they just know from all they have heard about it from the MS Society that it is not good. Then I ask if the Sank diet will hurt me. Because they have never actually read Swank’s work that forces them to either read it before answering me or end the discussion.

But recently, I have changed my tactics and ask them if they concur with the AMA endorsement of the National Academy of Sciences guidelines for diet recommendations for the American people. If they do and most would not dare disagree with the AMA, then I explain that the Swank diet follows those guidelines in every way. Once they realize what the Swank diet really is, they usually endorse it heartily, not because of the MS, but because of the AMA.

Once you have that hurdle behind you, it is much easier to follow the diet because now instead of following some crazy MS diet that can’t help you, you are suddenly following the type of diet that the AMA recommends for everyone and nobody should object to that.

The next stumbling block is the supplements. Here I’m afraid you will never get an expert concurrence. My approach has bee to simply inform the doctor I am taking these specific supplements in these dosages. This usually brings an even bigger tirade. If and when he becomes rational enough for discussion, I ask him for specific objections to my regimen. Most doctors do not have enough knowledge of vitamins and nutrition to be specific in their objections and I’ve yet to find one who would take the time to look up specific toxicity data and determine for themselves that everything I take is perfectly safe.

So you will probably never get an encouraging word from your doctor on this point, but at the same time, he will not be able to show you anywhere that you are in danger from taking the supplements because such danger does not exist. And I guess what most of us need is simply the assurance that we are not going to do ourselves in by taking vitamins and other supplements.

The exact supplements I use are in Chapter 11 of the book so you should have no problem finding them if you wish to.

(2) The Swank diet, rigidly followed for the rest of my life, and with

(3) A nutritional supplement program to enhance the effects of the diet, I have been able to become physically the best that I can be.

The Lefty will always be left-handed, the redhead will always have red hair and we will always have MS, nothing is going to change that. But our MS doesn’t need to be any more troublesome to us than red hair or being backwards with our hands.

I wish there was something I could say that would make instant believers out of each and every MS patient I come in contact with, but I just have not figured out how to do that. Some of you patients here tonight will leave determined to change you eating habits right away, tonight and stay with the new habits forever. But I know that once you get out in the real world of Taco Stands and Pizza Parlors that many of you will falter. Still others will listen to one of the so-called experts and stop trying.

But there are a few of you out there just as stubborn as I am, who will go on the program and who will get better. It is to you few with the guts to do it right and do it forever that I dedicate myself. And someday, after perhaps years of working with the diet and swallowing all those pills, maybe you and I will meet on the tennis court. And as we serve and volley maybe some of the rest of these patients here tonight who didn’t follow the program will be there in their wheelchairs watching us, eating hot dogs and ice cream and saying how lucky we are while they shake their head in wonder.