This specific ISBN edition is currently not available.View all copies of this ISBN edition:
"synopsis" may belong to another edition of this title.
I used to run marathons and climb mountains in Nepal. I’ve competed multiple times in the American Birkebeiner 54-kilometer cross-country ski marathon (once while pregnant), earned a black belt in tae kwon do, and won a bronze medal in women’s full contact free sparring at the trials for the 1978 Pan American Games in Washington, DC. I used to feel invincible.
Then I developed multiple sclerosis. After decades of troubling symptoms I tried to ignore, I was finally diagnosed in 2000. By that time, the disease had a good footing in my central nervous system. My decline progressed rapidly. Within two years of my diagnosis, I could no longer play soccer with my kids in the backyard. By fall 2003, walking from room to room for my hospital rounds exhausted me, and by summer 2004, my back and stomach muscles had weakened so much that I needed a tilt/recline wheelchair. Within three years of initial diagnosis, my disease had transitioned from relapsing-remitting multiple sclerosis into secondary progressive multiple sclerosis. In that phase, disability slowly progresses despite increasingly aggressive therapy. By 2007, I spent most of my time lying in a zero-gravity chair. I was 52 years old.
Everyone with multiple sclerosis has a story—the years of clues and strange symptoms that finally, in retrospect, make sense. It is in the nature of most neurological and autoimmune diseases that symptoms accumulate slowly, bit by bit, over the course of decades. This is what happened to me. As a doctor, I was compelled to find answers: a diagnosis and a cure. As a patient, I was compelled to save my own life.
Like most physicians, I was always focused on quickly diagnosing my patients, and then using drugs and surgical procedures to treat them—that is, until I became a patient myself. Conventional medicine was failing me. I saw that. I was heading toward a bedridden life. Since the beginning of our profession, physicians have used self-experimentation, either to prove a scientific point or to treat themselves when the conventional treatments were of limited value. In that tradition, and in the face of this chronic, progressive disease for which there was no cure, I began to experiment on myself. What I didn’t expect were the stunning results I got from my self-experimentation: I not only arrested my disease, I achieved a dramatic restoration of my health and my function. What I learned changed forever how I saw the battling worlds of health and disease.
More than a hundred years ago, Thomas Edison said, “The doctor of the future will give no medicine, but will interest his [or her] patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.” This became my new course, my passion, and my mission. I understood health and disease in an entirely new way. I became a new person, both physically and emotionally, both personally and professionally. I also became passionately committed to helping other people become new people, too.
The stress and pressure of medical school may have been what triggered my first symptoms in 1980, years before I had any idea what they were. I would eventually call them “zingers”—intense stabs of facial pain. They lasted just a moment and would come randomly, sometimes in waves, the episodes building over a week or two and then gradually fading over the next several. They were most likely to happen during my busiest and most brutal hospital rotations, with shifts lasting thirty-six hours and allowing for little sleep. Over the years they became steadily worse, like electrical pain that felt like a 10,000-volt cattle prod sticking me in the face.
At the time, I thought the episodes of face pains were an aggravation, nothing more. I thought it was an isolated, unexplained problem—one of those medical mysteries that don’t really require solving. Even as a doctor, I didn’t think much about it. I was too busy with my own patients to dedicate too much diagnostic thought to myself. I certainly never suspected an autoimmune problem.
This was my first symptom, but it was not likely the moment when multiple sclerosis began its relentless march through my central nervous system. For at least a decade before then, probably two, my brain and spinal cord had been under siege from friendly fire—my own immune system attacking the myelin that insulated my nerves. I couldn’t feel it at first. I couldn’t feel it for years. Nevertheless, it was happening.
As the years passed, I became a mother, first to my son, Zach, then my daughter, Zebby. The rigors of parenting and full-time work distracted me, but my multiple sclerosis clock was ticking. This was a clock I did not hear, even though alarms of visual dimming and the zingers were going off. I fully expected to be an active, adventurous, vibrant woman for at least forty more years. I imagined mountain climbing with my children, even as a white-haired old grandma. I never thought my unexplained symptoms would have anything to do with something as basic as my mobility or as crucial as my thinking.
One evening at a dinner party, I was talking to a neurologist and I happened to mention that I perceived the color blue somewhat differently in my right and left eyes. Blues were a bit brighter when I used my right eye than if I used the left. She seemed interested.
“You’ll have multiple sclerosis someday,” she said. It was the first time anyone had said those words. My father died the next morning, and so her words were forgotten in the chaos of grief. Years later, I recalled those prescient comments.
The day my wife, Jackie, noticed I seemed to be walking strangely, I didn’t believe her. I didn’t even notice until she insisted we go for a three-mile walk to the local dairy for ice cream. By the time we got back, I was dragging my left foot like a sandbag. I couldn’t pick up my toes. I was exhausted, nauseated, and scared. I scheduled an appointment with my physician.
Many people who are ultimately diagnosed with multiple sclerosis go through a similar experience. Symptoms develop slowly over years, and diagnosis may take additional years once physical problems manifest and become obvious.
I spent the next few weeks going through test after test, dreading each result. Some tests involved flashing lights and buzzers. Others involved more electricity and more pain. There were more blood tests. I said little and feared much. Everything came back negative, but there was clearly something wrong with me.
Finally, we were down to the last test: a spinal tap. If there were oligoclonalband proteins (an indicator of excessive amounts of antibodies) present in the spinal fluid, then the diagnosis would be multiple sclerosis. But if this test was also negative, then I likely had what they call “idiopathic degeneration of the spinal cord” (meaning they don’t know the cause). In the long list of potential diseases I had faced, this seemed like the best option. I was hopeful.
When I got up the next morning, I knew that the results should be in my chart. I could get into the clinic medical records from my home computer through remote access. I brought up my medical record on the screen and went to the laboratory section. Positive. I stood up. I paced. Two hours later, I logged onto the system and checked again. Five times I looked up my results,
hoping they would somehow change. They never did.
It was official: I had multiple sclerosis.
In summer 2000, I moved with Jackie and my children from Marshfield, Wisconsin, to Iowa to accept a joint appointment as assistant professor at the University of Iowa and chief of primary care at the VA hospital. I was newly diagnosed with multiple sclerosis. I was taking Copaxone, which my physician had prescribed for the MS, and I relied entirely on my physicians for treatment decisions. I had been trained as a doctor and conditioned to believe that doctors know best. Besides, what did I know about multiple sclerosis? It wasn’t my area. I was seeing the very best people and getting the very best treatments available, so I assumed I was doing all that I could do.
I was determined not to let my diagnosis influence my new job. I was in a leadership position with plenty of challenges, and I loved it. I enjoyed teaching, and the kids were thriving in their new home. I thought I was doing pretty well, and so did my doctors. I even began to imagine I might never get much worse. I dreamed I might not even have to confess to my children that
I had multiple sclerosis.
Then my right arm and hand became weak. My doctors gave me steroids to suppress my immune cells, and my strength slowly returned, but it was the beginning of a slow, steady decline. I could see it, Jackie could see it, and so could the kids. They’ve since admitted that sometimes it was embarrassing to have me around because I was less and less mobile. Sometimes they wished I wouldn’t attend their activities, and that made me feel guilty for wanting to be there. It was a strain on the whole family, and I felt responsible. It was all my fault. I was supposed to be the provider, and I was slowly losing my ability to manage my own body. It had been only two years since my initial diagnosis.
Then something happened that changed my life. In 2002, my neurology doctor at the Cleveland Clinic noted that I was slowly getting worse and suggested I check out Ashton Embry’s MS charity website, Direct-MS, at www.direct-ms.org. Dr. Embry is a geologist with a Ph.D. whose son has MS. Dr. Embry’s son improved dramatically by changing his diet, so Dr. Embry became an active and vocal proponent of the link between diet and multiple sclerosis. This was the first I’d heard of such an idea—or, at least, the first time I paid attention. Although it sounded a little like “alternative care” to me—and, being a conventional doctor, I didn’t put much stock into what I saw as fringe medical practices—this was a suggestion from my neurologist, so I took her seriously. I decided to check it out.
Dr. Embry’s website was full of scientific references, which I began to read one by one. The articles were from peer-reviewed journals, written by scientists from highly respected medical schools. This wasn’t “soft science.” This wasn’t “fringe.” This was legitimate research. It was difficult science, too. A lot of it was in fields outside my expertise, or it relied on basic science concepts that hadn’t been part of my medical training. I had trouble absorbing everything, and the MS-related brain fog didn’t help. There was so much new information—how did I not know about any of this? After a lot of intensive reading, I determined that Dr. Embry was not a charlatan and that maybe he was on to something. What if diet could have a major impact on MS? After years of leaving my health in the hands of doctors while continuing to decline, this idea fascinated me. I could control what I ate. It seemed too easy and too good to be true. I had to know more.
Dr. Embry’s website was the first place I heard about Dr. Loren Cordain. Dr. Cordain linked changes in the human diet to the development of chronic disease in Western society. He had published a number of articles and had also recently published a book for the public called The Paleo Diet: Lose Weight and Get Healthy by Eating the Foods You Were Designed to Eat, which was much easier reading than the technical scientific papers.1 I began to absorb information more quickly: molecular mimicry, leaky gut, lectins, immune modulation (I’ll talk about all these things later in this book). I began to see where Dr. Embry and Dr. Cordain were going with their theories. I began to consider that what we eat has a major, rather than a minor, influence on how our bodies work.
I was particularly interested in the idea that excessive carbohydrates and sugars in our modern diet lead to excess insulin and inflammation. The evidence that the original human diet could possibly improve my MS was compelling, but switching to this kind of diet would be a major change for me. I had been a vegetarian since my college days and I loved my beans and rice.
I loved making bread. Could I really cut out grain, dairy, and legumes, the current staples of my diet?
But I wanted to arrest my disease more than anything else. I wanted to keep walking, working, and playing with my kids. I decided to try it. Meat was back on the menu, and I gave up the now-forbidden foods I loved so much. At first the smell of meat was nauseating to me. I started slowly, adding meat to soup in small amounts. With time, it got easier.
I was hopeful about this change, but despite this switch to a Paleo Diet, my decline continued. I couldn’t play soccer in the backyard with my kids without falling. I couldn’t take long hikes with the Cub Scouts and Girl Scouts.Then it became harder to take even short walks with Jackie. Fatigue became more and more of a problem. I was disappointed, at times despondent, and tears came at inconvenient times. But I was determined. Some of the entries on Embry’s website said that recovery took five years. I realized I could not expect an overnight miracle, so I stuck with the changes. Even if progress would be slow, it was still something I could do for myself, and that came with its own sense of empowerment.
Meanwhile, I rearranged my schedule to avoid walking. My doctor told me that it was time to get a scooter, and then changed his mind and suggested a tilt/recline wheelchair because of the worsening fatigue. He also suggested I try taking mitoxantrone, a form of chemotherapy. When that didn’t help, I switched to a new, potent immune-suppressing medication called Tysabri; but before I went in for my third injection, Tysabri was pulled from the market because people were dying from the activation of a latent virus in their brains. After this, my doctor suggested that I take CellCept, a transplant medicine, which would suppress my immune cells. I often had mouth ulcers after that. My skin was grayish. I started every day tired, and despair gnawed at me each night as I lay in bed. Jackie, Zach, and Zebby were my lifeline. Jackie would hold me and tell me we’d get through everything together. We often discussed our kids and how they were absorbing the ways that we dealt with what was happening. For their sakes, I didn’t want to let my discouragement and fatigue show.
Though I had resisted getting the tilt/recline wheelchair, it actually felt liberating once I had it. I was able to go outside and stroll (or rather, roll) with my family as we hiked around the county park or the neighborhood. It did make my life easier. It weakened my back muscles, however, and the more those muscles atrophied, the more time I spent in bed. I didn’t talk about it much, but I thought it likely that eventually I would become bedridden. Sitting at my desk at work was exhausting. Then I found a zero-gravity chair, designed like the NASA chairs used during space flights. When I was fully reclined, my knees were higher than my nose and gravity held me in the chair. I had one for my office and another for my home. That helped with the fatigue a great deal, but this wasn’t how I wanted to live my life. I just couldn’t accept that this was my future...
"About this title" may belong to another edition of this title.
Book Description Condition: new. Seller Inventory # NewButterFly1583335218
Book Description Hardcover. Condition: new. In Never used condition. Seller Inventory # Nbynew1583335218
Book Description Condition: new. Seller Inventory # NewCamp1583335218
Book Description Hardcover. Condition: new. New. Fast Shipping and good customer service. Seller Inventory # Holz_New_1583335218
Book Description Condition: new. Seller Inventory # newport1583335218
Book Description Hardcover. Condition: new. New. Seller Inventory # Wizard1583335218
Book Description Hardcover. Condition: new. New Copy. Customer Service Guaranteed. Seller Inventory # think1583335218
Book Description Condition: New. Book is in NEW condition. Seller Inventory # 1583335218-2-1
Book Description Condition: new. Seller Inventory # FrontCover1583335218
Book Description Hardcover. Condition: Brand New. 421 pages. 9.25x6.50x1.50 inches. In Stock. Seller Inventory # __1583335218