My Observations of Twenty Years
on the Swank Diet
by Donna McFarland (a.k.a. stargazer)

April 17th, 1989. The date will always be imprinted as one of the worst days of my life. Diagnosis: Multiple Sclerosis. Prognosis: top third of the worst cases seen at Barrows Neurological institute. 3-5 good years left. One never forgets those words, that declaration of your future.

The ultimate challenge of my life thus far began that day. How life as we know it can change in one hour in a doctor’s office!  My mother’s life had changed as dramatically twenty years earlier when she was diagnosed with Lupus. She died at thirty three, leaving three children behind to wonder forever if they were to succumb to her fate.  I feared Lupus was in my genes, but I didn't inherit her auto-immune disease; I contracted another ...M.S.

The discovery of Dr. Roy Swank, M.D.. Ph.d, of neurology, came fairly shortly after my diagnoses. Initially, the information I read about him was simply too incredulous to completely comprehend. How can this be? I desperately wanted to believe, but I was so baffled and confused, pushing back the hope that was struggling to rise within me. After all, I’d immediately questioned the neurologist, who diagnosed me, if there were any diet modalities to treat this. Using his best medical school regurgitation skills to discourage any further thought on that issue, he was quite emphatic in his negativity.

Despite his admonitions not to waste my time, I sought other answers. In the meantime, he frightened me deeply about all that was coming. I did indeed take his 80 mg’s a day of prednisone, fearing the worst if I didn't comply. The drug effects were horrendous, and full of negative repercussions. I did as I was told, but not for long.

The power of persistence paid off. With daily phone calls, I was able to get an appointment to see Dr. Swank, within three months of diagnoses.

That was the day, that truly redefined what it was, to have and live with M.S, for me.

As I prepared to meet this man, learn of his work, I began to do the homework on his track record, his beginnings, and his unbelievable success rate over decades. He’d published articles in medical journals that numbered in the hundreds. I became a devoted student, an ardent fan of this man, well before I met him.

This discovery I would soon relate as the best day of my life. I was soon to be overwhelmed by the hope that was on my horizon.

As I spoke with him, listened to him, my awe and reverence for the brilliance of this man grew to phenomenal proportion. The words "if you do as I say Donna, you can lead a normal life". What lifesaving words,what a true gift, to a spirit in such complete despair, to one whose life script had recently been shattered. I decided then and there, that I would never, ever have a chance like this again. I’d do what ever was necessary to be one of his long term success stories. I was now, an official "Swanker".

Over the course of ten years as his patient ...the gems of wisdom he taught me became tools of survival .

He stated repeatedly: "My patients have no problem sticking to the diet. The most difficult challenge for them is adhering to the reduction of energy output, to rest more, become calmer. The prescription was always the same. Rest, calm, Learn to pace. This was the hardest of all for me to learn. There was bit of a learning curve to the dietary change, but in no time at all, that was the easiest of behavior modifications.

We are as a group, overwhelmingly Type A personalities. Fighting this natural inclination to maximize output every single day, is incredibly challenging. We simply feel too good, on diet, and don’t want to waste a single moment in the day.

Year after year, I remained steadfastly on his diet. No cheating. However, in the midst of home improvement remodeling projects on both primary home, and a little getaway place in the mountains, my stability began to suffer. I was pushing beyond boundaries constantly. Taking one or two mile walks every single night, while my feet tingled, palms of hands would burn,optic neuritis would flare up.

I couldn't believe that I had any limitations. Denial? Perhaps. I rationalized that if I was so compliant with diet, I could easily bypass the rest portion. I was doing everything right, wasn't I? How I resisted his continual advice to "go to bed, stay in bed, I’ll call in medication for you if need be to achieve that".  It’s no wonder to me now, that I found myself in a three year, unrelenting exacerbation. What a huge lesson...you either do this program HIS way...or don’t do it at all. You cannot skip over this crucial piece of the puzzle. I was frightened beyond belief, depressed as could be every single day. My overwhelming conclusion was that I had caused myself through my ignoring of symptoms, to advance to the chronic progressive state. That was a deadly fear, and to think I’d brought it on myself? How could I have let this happen?

As I lay in my bed day after day, I could only feel relieved that I had not chosen to have children. No one, expects this to happen. How on earth would I have cared for them? I was in bed, more than out, for almost three years. Fatigue, was deadening. Burning extremities were constant. Optic neuritis was hugely impacting. All of my earliest symptoms prior to diagnoses were flaring at once and they didn't stop.

I’d learned the hard way that no amount of rationalization or excuses is going to be worth what I had to go through now. I had to live it out. Rest must be a part of everyone’s day. Period. He told me, that I should plan on doing 50% less every day, than I had been doing. That seemed was unfathomable to me.

I get it now. Stress is a part of everyone’s life. It’s learning to manage it, that’s the key. Twenty years down the road, no one I meet can see that I have MS, not even my family doctor. I feel it when I allow myself to get overtired, or under prolonged amounts of stress. The symptoms are more pronounced. Red flags, I call them. Warnings, to slow down, reduce activities. I pay attention to them with rest, not drugs.

Everything that I do, I am able to do because of Dr. Swank's dogged dedication, his tireless efforts, his life’s work. I give thanks every day for the fact that I found him. How could I not share this with everyone I possibly can? I’m honored to, I must, and I will.

What I know for sure now is...you are NOT going to feel the way you do in year one or two on diet, forever. I know you must learn a new set of rules for living, if you want to have a life free of disability. He gave us all the tools we require to live a full life with this disease. As  a beneficiary of his brilliance, I am morally bound to give back, to share what I was so priviledged to learn, directly from him.

Barbara Dugan, Dr. Swank’s nurse, told me once that the longer a person has MS, the longer an exacerbation will last. The harder it is to get rid of. That has remained with me always. I’ve lived it.

I’ve had just that one exacerbation in twenty years. Just as he said. No new symptoms have come on. Just as he said. When I rest consistently, eat well, get some moderate exercise, and stay COOL in doing so, it pays wonderfully. Maintaining a positive outlook is an important tool as well. Living through the 3 years in exacerbation, in which a divorce ensued as well, was a nightmare I’d wish on no one. I did time, in a wheelchair, yes, and a hospital, for a nervous breakdown brought on by deep despair. Nothing will depress you as much as knowing you could have prevented something that terrible.

I’d long thought of what would be the most meaningful way to celebrate my twentieth anniversary. A dear friend’s offering of a weekend get away in the lush forests of Pennsylvania seemed perfect. Surrounded by natures finest specimens, all of life presented it’s Spring display for me to enjoy. How could life be any better?  Dr. Swank was in my thoughts all weekend.  I thank him for giving me the gift of time to so enjoy the beauty of this environment.

I hope that my words bring you hope, encouragement, confidence that this IS do-able. That you really have the ability to control this quite unpredictable disease, through diet alone. They didn't HAVE any drugs back in 1989. This was my only, and as it turned out, the BEST way to manage this disease. Why is this so difficult for the medical establishment to get their mind around? Is it not unconscionable to withhold this life saving information? The truth is out there my friends, it has been for a very long time.

- Donna McFarland (a.k.a. stargazer)
Proud Swank dieter of twenty years