Multiple Sclerosis and the Writing Life
Jeanne Desautel Foster, novelist, ponders the effects of MS on her life and writing.
Sunday, April 10, 2011
nutrition research
Davis taught that Crisco was a dangerous product. She pointed out that it was made from vegetable oil, which had been chemically altered to make it stable and to cause it to be solid. She said that plain old lard was much safer to cook with. I heeded her advice, and over the years the only solid shortening I had in my pantry was a small can I used to grease cake pans. This can of Crisco sat on my shelf for years. Davis also explained that butter was much better than margarine. In fact, she taught me to get rid of margarine completely. Now we know that Crisco and margarine are trans fats--a term Davis may not have ever heard as she died 30 years ago.
Where she was wrong was in advising people to use vegetable oils that were cold-pressed. Yes cold-pressed vegetable oils are much preferable to oils which have to be chemically extracted in factories. By this I mean all of the oils you see on the shelf in your grocery store except for the cold-pressed ones and the olive oil. Except for olive oil, vegetable oils are omega six oils. They can easily become rancid due to be opened bonds on their atoms. When ingested, they can oxidize causing damage to blood vessels. Now we know that omega sixes should be used only a little. We know that olive oil--an omega nine with only one open bond--is good for us.
But only recently have I discovered that the saturated fats we have been scared away from are necessary for many processes within our bodies, not the least of which is the brain. I am glad that I had still been following Davis's advice to mix butter with olive oil to make it more spreadable and more healthy; however, now I am cooking with butter and coconut oil--both natural and healthy saturated fats.
I also earlier mentioned the Swank diet for multiple sclerosis. Dr. Swank, beginning in the 1950s, put his MS patients on a diet free of saturated fat on the theory that people with MS have difficulty breaking down the saturated fat in the body. He theorized that small globules of fat may cause a breach in the blood brain barrier close to spinal cord nerves in the brain and allowing toxins to get through and damaged the myelin. I tried to follow this diet when I was first diagnosed, but found that eventually I drifted a way from it. I always felt that I should have given it more time, but recently my reading of the the importance of saturated fat in the brain and the discovery of an Austrian doctor who puts MS patients on a low carbohydrate, high fat diet with good results has sent me in a different direction.
My current diet and research has led me to limit my carbohydrates drastically. I am eating meat, eggs, cheese, and low starch vegetables. As my weight had continued to climb since I became restricted to a wheelchair and as I was having no success losing weight with a low-fat diet, I am happy to see the weight beginning to melt away. I will continue with this diet until I see a strong reason not to.
I am not giving advice really. Instead, I am chronicling my own discoveries about nutrition. What I have found and what I had learned forty years ago in reading Davis's books, is that when our diet began to be full of processed and changed foods, are national health began to decline and we began to put on weight. I am continuing to research this contradiction about saturated fats and will report back as I make discoveries.
Tuesday, March 1, 2011
Hope and despair
Alexander Pope’s epigram, “Hope springs eternal in the human breast,” may be one of the best known and often repeated quotes about hope in the English language, but its truth is questionable. Human beings need hope; however, sometimes it totally deserts us.
When we face the last days of the final illness and the doctors and family give up hope, does hope still spring up in our breast? I am not sure it does. There must be a time when we have nothing to look forward to but the end. Or is there still hope that the end will be swift or painless or delayed a day or two?
The French word for hope is espoir, and the word for the opposite is desespoir, the word which became despair some years after the Norman Conquest brought French to England in 1066 A.D. When all hope is gone, are we left with despair?
Defined in modern times as a belief in a positive outcome to circumstances or an expectation of a positive outcome, hope once meant to have confidence or trust in something or someone. Even today a political party might refer to a promising new candidate as their best hope. I think of hope as an optimistic view that the future will be better, that better times are ahead.
Pope was right in thinking the human soul yearns for something better in the future. As a child I hoped for a certain doll for Christmas when I was ten. The precursor to Barbie was what we called a high heeled doll, and I wanted one with all my heart. My father, however, who had been stationed in South Korea for a year, bought baby dolls for us from the post exchange and gave me one for Christmas. My hopes were dashed and for a day or so I felt despair.
Later I hoped to make good grades or hoped to go to the college I wanted. Some hopes were met, others not. While in college I hoped for a career in writing and hoped to find the right man to marry. Hopes deferred were still hopes. I just projected them to some distant future. After all, when you are twenty-one, you have all the time in the world stretched ahead.
Later my hoped centered on my children, on financial goals, or on a new house. Even in down times, I remained hopeful that tomorrow would be better. When I received a diagnosis of multiple sclerosis, I had hope it would not be as bad as the worst cases. I had hope that diet, vitamins would mitigate the disease. I had hope I could avoid a wheelchair.
When I started writing, I had hope for finding a publisher and hope my work would find acceptance among readers.
Something happened recently that gave me pause for thought. The husband of a woman who had died after several years with Alzheimer’s disease, asked me to publish her books through my small independent publishing company. She had published her first book, a short novel for teens, in 1988 through an independent press run by a University of Alabama professor.
This lady struggled to find a publisher, finally found a small press, did her own marketing, and no doubt felt great disappointment of her hopes for a wide circulation of her books. And then, a few years later, she slipped into dementia and finally death.
Working with her manuscript put my own hopes in perspective. How important was her hope to become a published writer when she discovered that she was losing her memory? Did she ever find herself looking at nothing but despair?
Perhaps she did. I will have to ask her husband how she handled those dark days before the illness took all worry away; however, I do know one thing about this woman. She was a Christian, a former missionary to Navajo children. Her hope was not in this world.
Like this woman, I also see the future as darker for me than the present. Sometimes I flirt with depression as my vision of the rest of my life seems bleak. About the time that my mind goes this direction I am reminded of one wonderful thing.
My hope is not in this world. My future does not end at my death.
Hebrews 11:1 Says faith is the evidence of things hoped for. Wow! What a deep paradox! The evidence of my hope for success as a writer would be a best-selling book, not believing with all my heart that I would have one someday. I could believe all I wanted, but that did not make it true.
“Evidence”? How can faith be evidence? Evidence is something you can see or touch.
The writer of Hebrews was not talking about that kind of faith. He meant faith that Jesus Christ is the Son of God and that He died on a cross to pay the penalty of my sin. I believe that totally. Why do I believe? I believe because I know—I just know. I have been changed by that faith. I feel it. It is part of me. It has upheld me at every crossroad in my life.
Paul the apostle explained this paradox in Romans 8:24 (New International Version). “For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have?”
So now, when the gloom of despair appears on my horizon, I remember to visualize what I really have to look forward to. A glorious reunion. A forever joy. A place where I will be whole through eternity.
Pope’s couplet continues with a second line: “Hope springs eternal in the human breast/ man never is but always to be blest.” He thought we never truly felt as if our lives were good, but always hoped the future would be better. On earth, things erode and fall apart, and decay. Hope on earth will inevitably lead to disappointment.
For those with faith in Christ, the time will come when there is no need for hope.
Saturday, February 12, 2011
LDN
A month later I came across an MS website and noticed some heated discussion of something called LDN. I began to ask questions and eventually started using this drug. I am enclosing some info from another site to explain what it is.
"What is low-dose naltrexone and why is it important?
> Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.
> In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.
Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.
In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body's immune system. He found that this low dose, taken at bedtime, was able to enhance a patient's response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]
In the mid-1990's, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN."
I found out that low doses of naltrexone inhibit the body's production of endorphins at night, causing the body to work hard and overproduce them. The endorphins help the body fight the effects of diseases.
The first night I went six hours without having to get up to use the bathroom. I had immediate relief from night time temperature fluctuations. My fatigue level was much better and i endured the heat better than I had for years.
Within a few weeks I was typing and playing the organ again. I also regained the feeling in my toes. Due to my stage of progression, I did not regain any more lost function; however, I believe my worsening condition in the last three years is all due to gaining weight and losing condition in my muscles.
The two side effects of LDN are vivid dreams--mine was the same nightmare where I woke up screaming that I had forgotten to take my medicine--and increased leg stiffness in the morning. I have had many suggestions for dealing with the stiffness but still find that a problem.
One of the best benefits of LDN is an increased sense of well-being. Since depression can be bad for people with MS, anything that makes you fell better is good.
LDN cannot be taken with immune suppressants as it builds your immune system. It can be taken with copaxone, I think. Some doctors refuse to prescribe it because it is off-label and not approved for MS. This is silly as they prescribe amantadine off-label all the time for fatigue. My neurologist gave it to me when I asked for it and was interested in seeing how it worked for me. Because I am secondary progressive and none of the current drugs are intended for SP, she felt as if it couldn't hurt. For those whose docs won't prescribe, there are other (legal) ways to obtain it.
Tuesday, January 25, 2011
good and bad fats
Since early childhood, I have loved buttery, creamy foods. I adore chocolate, cream cheese, sour cream, ribs, cheesecake, and cheesy pizza. After I married, at age twenty-one, I began to put on weight. My skinny husband loved hot fudge sundaes and banana splits, so I –who had always been thin—went right along.
When I discovered Adelle Davis, I found she encouraged her readers to add cold-pressed vegetable oil to their diets. She knew that vegetable oils—what we now call omega-6 oil-- easily broke down under the heat and stress of the extraction process. She was right in wanting us to get more oil in our diet, but wrong because she did not know that later research would show that the open bonds in the molecules in polyunsaturated fat caused oxidation in the body and could lead to many health problems. She died in the 1970s and never learned about antioxidants—even though she urged us all to take vitamins, some of which are antioxidants.
Davis encouraged her readers to take cod liver oil, an Omega 3 oil, which is a good thing. She taught me to shun shortening and margarine, even writing that lard was preferable to the white canned shortening American cooks relied on. It was from her I learned not to save and reuse cooking fat. Old grease or oil is oxidized—otherwise known as rancid.
Only within the last few years have Americans learned about the dangers of trans fatty acids, those found in man-made spreads. Another author from whom I learned the science of trans fatty acid is Udo Erasmus, a man who wrote his dissertation on oil and later published it as Good Oils, Bad Oils.
Erasmus explained that fat molecules are chains of atoms. The shorter the chain, the lower the number in the fat’s name, and the less likely this fat is to clog the arteries. Saturated fats come from animal sources mostly—the exceptions are coconut and palm oil. Saturated fat molecules are wavy, which causes them to stick together. The longer the chain, the more they like to coagulate when cool.
Butter, butyric acid, has only two atoms, so melts or softens at room temperature. It is a good saturated fat. From Davis I learned to make super butter: soften butter, then mix it with oil until spreadable. Refrigerate before using. Davis used sunflower oil. I use extra light olive oil. Extra virgin is better but tastes stronger.
Unsaturated fat molecules are straight; therefore, they do not stick together unless very cold. Scientists had to find a way to make these molecules coagulate through chemical manipulation. They call these trans fatty acids. Trans fatty acids are substitutes for saturated fats. When butter was in short supply during World War II, someone invented a way to make oil into pseudo butter. As their first product was white, consumers refused to spread it on their bread, so margarine companies included a packet of yellow food coloring to add to it. Later, they added flavor and color before selling.
Why is margarine bad for us? It is made from chemically altered polyunsaturated fat. Bends have been forced into the long chains, making a product that clogs the arteries, has open bonds that oxidize, and who knows what other chemical bad stuff.
As time went on in my life, I got away from much of the good I learned from my study of nutrition via Davis. I moved to small towns where health food stores were hard to find, and I was financially unable to go find them. However, I still made soup from scratch, did not feed my children processed cereal, and tried to cook from primary ingredients rather than packages.
After my MS diagnosis, I immediately went back to my healthy roots. I haunted the health food store, found homeopathic medicine for my hay fever, bought flax seeds, and found cod liver oil. I searched the health area of Books-a-Million, our local chain bookstore. Here I found a wonderful book, MS—A Self-help Guide, by an English woman, Judy Graham.
This book got me interested in diet as a way to control MS. She has a new, updated version available now named Managing Multiple Sclerosis Naturally: A Self-Help Guide to Living with MS. Her advice led me to Dr. Roy Laver Swank’s book, The Multiple Sclerosis Diet Book, which he wrote with Barbara Brewer Dugan.
For nearly sixty years Dr. Swank, a neurologist, worked with MS patients, using a diet protocol he developed. He was not willing to do a double-blind test because he wanted all his patients to follow the diet. However, when he compared those who stayed on the diet with those who quit, the faithful followers stayed healthy while the others went downhill.
I immediately took on this diet—no easy chore. The Swank diet limits you to 15 grams of saturated fat a day. No red meat for a year and little after that. Cheese should not be eaten as it is so high in saturated fat. No chocolate, whole milk, and few eggs. I followed this diet perfectly for two years after diagnosis until a Christmas gift of chocolate truffles started me on a chocolate binge.
I was stupid not to go back on this diet, but back in the mid-1990s, I had absolutely no support. My doctors and others with MS scoffed at the diet, so I began to doubt its validity. But Dr. Swank was right when he said those who leave it go downhill. Today I am following it once more.
Dr. Swank’s theory, backed by some experiments, was that MS patient’s bodies have trouble breaking down saturated fats, and that small molecules of this fat collect in small veins feeding the central nervous system. When the fat globules stretch the veins, it causes a breakdown in the blood-brain barrier, allowing foreign invaders (viruses, chemicals, metals) to attack the myelin sheath of the nerves.
I was reminded of this theory recently (2008-2010). Dr. Paolo Zamboni theorized a blood flow problem in MS compromising the blood-brain barrier but saw the blockage (CCSVI) in the jugular and azygos veins in the neck. Some people have had angioplastys to help these veins. More trials are underway now; however, these results are so far inconclusive. It does, however, underscore the necessity of limiting saturated fats if you have MS.
Thursday, January 20, 2011
More from my MS book--
Looking back at when I probably had the beginnings of multiple sclerosis, my 20s, the first thing I did wrong was to avoid the sun. This was the 70s, and the scare health news of the time was about cancer being caused by excessive exposure to the sun.
I grew up in the years before air-conditioning. My sisters and my friends and I played out all summer long, indeed all year long, in the sunshine. We wore shorts and short sleeve top, giving us the greatest amount of sun exposure possible. We played in the sprinkler in our bathing suits and went to the pool for hours.
Recently, when I went to my neurologist for my regular checkup, she checked me for a vitamin D deficiency and found I had one. She told me to go to the drugstore and buy a vitamin D and to take it regularly.
This deficiency is very common in people with multiple sclerosis. Now I look back on all the years I've spent avoiding the sun for fear of getting skin cancer. I went overboard to avoid swimming pools and sunbathing during the years when most young people spent hours in these pursuits.
When I was in my early 20s and a new journalism graduate, I went to work for the local newspaper in my hometown Lawton, Oklahoma. I worked in the feature department, and one of the assignments I had was to investigate the new type of store that had just opened--a health food store.
I went to the store and met the owner, who was very enthusiastic about the need for vitamin supplements and healthy foods. She loaned me a book by Adelle Davis, the 60s and 70s guru of vitamins and health foods. Mrs. Davis had done much research and, using the studies of her time, knew a great deal of about the efficacy of the different vitamins.
I grew enthusiastic about this subject as I researched it for a series in the paper. I read all her books and began to take vitamins myself. Using her advice, I took cod liver oil (rich in vitamins A and D) by the spoonful daily. I continued taking vitamins for several years until my husband and I began our family. Even then I gave cod liver oil to my babies. Eventually, though, the expense of vitamins to a young family with three children became prohibitive, I thought, and I drifted away from buying them.
Many years later, in some of the earliest material I found after MS diagnosis, I found a doctor who told his patients to take a teaspoon of cod liver oil daily. I did this for several years, but eventually got away from the diet. Although I knew cod liver oil is rich in vitamin D, I did not know the multiple sclerosis connection. I will discuss the Swank diet later.
So what did I do wrong? To begin with, I quit taking vitamins when I reached my 30s and felt I could not afford to them. I quit taking cod liver oil after I had been advised to take it by a multiple sclerosis specialist.
Would my health be different today if I had done all the things right? Yes, I believe it would. Perhaps I would still have multiple sclerosis, but it might never have I manifested itself as strongly had I kept my body well supplied with vitamin D.
Saturday, January 15, 2011
A Series of Adjustments
I guess it is natural to ask “why me” when you find out you have a serious illness. I don’t remember going through that stage. I had more of the “why not me” reaction. I did not feel sick. I could walk fine. It was scary, but it did not immediately change my life drastically.
Since being diagnosed sixteen years ago, I have seen multiple sclerosis as a series of adjustments. A few weeks before finding out I had MS, I was walking with my husband a mile a day, and now I did not have the stamina. Now I knew why I was so exhausted at the end of each school day that I headed for the nearest gas station for a Coke—which I immediately drank just for the sugar and caffeine lift.
I began to adjust. I adjusted to tripping a lot. Then I adjusted to falling once in a while. I kept driving until I could not lift my right leg fast enough for a braking emergency. At that point I got hand controls and drove many more years.
When I could no longer walk through a big grocery store, I adjusted to a smaller one. I adjusted to a cane, then a walker, and then a wheelchair. To keep teaching, I eventually bought a second-hand power wheelchair, which I only used at school.
My house was a split-level with a sunken living room. I adjusted to a stairlift to get upstairs, and gradually adjusted to sitting—first downstairs and then upstairs. Eventually I spent most of my time in my bedroom upstairs. I even had my own little refrigerator and microwave.
The main adjustment I made was the frame around my life being much smaller. I still had a picture inside, but the frame was smaller.
Immediate changes for the better that MS brought to my life:
External things fell out of focus. Suddenly I did not care so much about the peripheries of life. I turned my eyes on God in a way I never had before. He was the only answer to the uncertainties I faced. I decided to finally read my Bible straight through. All my earlier efforts had fizzled out in the minor prophets.
This time I set no time limit, read some Genesis, some Matthew, and a Psalm each day. I used a newer version, and it took a year and a half. Immediately I started over in another version, and finished in a year. By now I was teaching half a day, and even with grading had a lot of time, I chose another version and read it in sixth months.
One day I was telling someone how much I loved the Holman translation when I suddenly realized that I had fallen in love with the Bible, God’s Word, no matter what the translation. It took MS to narrow my focus to what was really important.
The other change for the better was that I finally had time to write—at least after I began working part-time. It was what I had wanted to do since high school, it was what I studied in school, it was my dream. I had made an effort to write when my kids were young; however, the need to help out financially sent me back to school for a second degree—this one in teaching.
Teaching English should take three or four hours a day of homework—I mean for the teacher. You can’t teach writing unless you are willing to spend the time marking papers. That is what it takes to help students improve their writing. This took all my after school hours before I went part-time, and a lot of time after.
But now I had a little time for me—thanks to MS. No matter what this disease has taken from me, it has given me focus on what is really important.
Friday, January 14, 2011
Introduction to MS book
The sun reflecting off the fields of snow outside provided all the light I needed as I read book after book while stranded inside a log cabin a few miles from the entrance to the Smoky Mountains National Park. I had no other way to pass the time.
We had traveled hours for the family funeral, but a freak storm had trapped us in this cabin. The grave high at the top of a hillside cemetery could not even be opened. After two days of reading by the reflected sun, my eyes began to act oddly. I blinked and blinked, trying to focus; however, when the funeral finally happened, I had to play the organ with one eye closed.
My plan to drive part of the way home so that my husband could rest had to be shelved. After trying to drive a while, I pulled off the road and proclaimed that I could not focus well enough to be safe.
I drove to work the next day with one eye shut. I taught that day looking at two of each student. By the end of the day I knew I needed to see a doctor. This was not going away.
“You have diplopia,” the ophthalmologist said, "and the cause could be many things—diabetes, Grave’s disease, Gilliam barre, aneurysm, myasthenia gravis, cataracts, or multiple sclerosis.” Of course, he quickly eliminated some, but for the others, he sent me off for a string of tests, ending with an MRI.
When I returned to the ophthalmologist for results, he left me sitting in a chair while he saw to another patient. Meanwhile, my folder with my tests results lay open on a table beside me.
Now, I am a naturally curious person with a good mind. I saw it this way. These were my test results. The doctor left the open folder in plain sight. Only a mindless robot with an overblown fear of doctors would not look.
So I looked, and I saw—“suspect multiple sclerosis.” I was not unfamiliar with the disease, but I was ignorant about it.
The ophthalmologist sent me to my first neurologist, who sent me off for a battery of tests commonly used in the 1990s to diagnose MS, including an evoked potentials test, another MRI, and a spinal tap.
I was lying forward on an inclined board while a nice doctor tapped my spinal fluid when he asked, “How did you get in this shape?”
I thought about my two weeks or more of going from one doctor to another and one test to another. You would have to know that I have always avoided doctors, going only when absolutely necessary,
“Do you mean how did I fall into the hands of doctors?” I laughed as I answered him, but had no idea how radically my life was about to change.