Category Archives: stroke

The Medical System Gave Up On Me

In 1995 I woke up from routine heart valve surgery with the left side of my body paralyzed from a stroke caused by the surgery itself: A tiny piece of tissue had broken away from the valve, traveled through blood vessels and lodged in my brain, blocking the flow of blood with its essential supply of oxygen to the neurons that controlled movement on my left side. I was 43 years old, married, with two young children.

If I had obediently followed the prescribed role of stroke patient in the world of conventional medicine, I would be an invalid in a wheelchair today. Instead, I am back at work as a medical journalist, paying taxes instead of collecting social security.

I recovered because “adapting” to my disability — which is what the insurance company doctor (who had never met me) told me to do after two months of occupational and physical therapy — was not an acceptable option for me. I didn’t want to buy shoes with Velcro, buttonhole fasteners or devices to hold a tomato steady so I could slice it. I didn’t want to walk with a cane or use a wheelchair in the airport. And I certainly didn’t want to spend valuable recovery time learning to use adaptive devices.

During my recovery, the health providers whom I found most helpful were those who recognized the devastation and despair that I felt as the result of this physical calamity. They saw me not just as a patient, but also as a wife, mother, writer and even amateur musician. In their understanding I found the encouragement, strength and hope that I needed to fight back to recovery.

The doctors I found least helpful were those who saw me not as a whole person, but rather as a “stroke patient:” These included the neurologists who shrugged and said “wait and see” when I told them that they must be wrong: I needed my left arm and I needed to be able to walk; and the heart surgeon who breezed into my hospital room just long enough to say, “Sorry you stroked, but heart-wise you’re fine.”

I quickly learned that while the advances of modern surgery can save your life, the conventional medical system — along with the insurers who pay for it — is not set up for full recovery.  The goal of the system was to get me out of the hospital or rehabilitation facility and send me home. What happened after that was up to me. The insurance company doctor (the one who never met me) told me that I had “plateaued,” which meant that while I had made progress in physical and occupational therapy, there would probably be no further improvement. I was at an impasse and additional intervention would be counterproductive (not to mention expensive).

As a patient, it feels as if the health insurers and many doctors want us to accept and “adapt” to our disabilities — whether we are recovering from a heart attack or stroke, suffering from chronic illness or pain or trying to manage the difficulties of growing older.  It is easier to prescribe pills and adaptive devices than to help us take responsibility for our bodies and our health.

I chose to fight my way back to recovery, and this is a tough thing to do for those of us who are accustomed to seeing our doctors as omniscient beings who control our health.  I learned about methods of healing outside of mainstream conventional medicine,including Traditional Chinese Medicine, chich has used acupuncture for thousands of years to treat stroke patients . Yoga, from the equally ancient Indian Ayurvedic system of medicine, gave me strength, balance and peace of mind. The Alexander Technique — a powerful system of movement education — taught me to use my body with less effort and reduced pain. Pilates exercise coaxed my weakened muscles back to work and craniosacral therapy restored my body’s natural rhythms.

I was fortunate: I had the will, the family support, the research skills and the financial means to pursue unconventional healing methods. Fighting the system is much harder for those who don’t have the money, the knowledge of alternative therapies or the emotional strength to keep up the lonely struggle for recovery.  Too often, such people live with pain, disability and despair.

Doctors must understand what illness means in the lives of their patients. They must use their positions, their authority and their words wisely. They have the power to heal, but they also have the potential to destroy hope and, along with it, the chance to recover.

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Filed under acupuncture, Alexander Technique, chronic illness, Chronic Pain, Doctors, Stories of Hope, stroke, Traditional Chinese Medicine

Walking from the Heart

This fall, I participated in the American Heart Association HeartWalk in Boston. This was significant for me on several levels: I did the walk with my two children, now 25 and 21. These are children  I was not supposed to have— according to the doctors I had seen when I was growing up—because the stress of pregnancy and childbirth was considered too much for a heart compromised by Marfan Syndrome. But thanks to the  skill and watchful care of a wonderful cardiologist, I was able to thrive through two pregnancies (with planned C-sections), and rejoice with my husband at the birth of our children, who are now well-launched in their own lives and continue to be two of the joys of ours.

The HeartWalk was also significant because I was actually able to complete two of the miles without pain—thanks to the benefits of “physical therapy boot camp” and my new program of regular gym workouts. Again, I feel as if I have “outwitted” some of the usual problems of Marfan Syndrome—joint pain— as long as I am faithful to the exercise routine. Walking that distance was meaningful for another reason: In 1995 I had mitral valve replacement surgery and woke up with half my body paralyzed by a stroke caused by a wayward piece of tissue that had lodged in my brain. I recovered by using integrative medicine (another story), so doing this walk without a cane or other assistance was particularly sweet!

Last—and certainly not least—my family and I walked on the HeartWalk team of the very cardiologist who, 30 years ago, heard and understood how important it was for my husband and me to have children, and who helped make our dream come true. Now, all these years later, here is the result. As I look back on the past 30 years, I realize even more how imporant it is not only to “own our health,” but also to find the right medical partners to help us.

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Filed under Boot camp, Chronic Pain, Health, heart arrhythmia, Marfan Syndrome, Pregnancy, stroke

Our Lives Were in Our Hands

This is the title of an article I wrote for the current (May) issue of Prevention Magazine. It is about three women, myself included, who overcame medical catastrophes: stroke, Crohn’s disease, cancer, kidney failure. Writing these stories has convinced me yet again about the power that each of us has to “own our health.” Yes, there are times when an illness or injury is just too overwhelming, and it may be right for the person to let go. I have the utmost respect for people making that decision. At the same time, I always like to think of the possibilities of hope and fighting back, at least to increase our chances of recovery.

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Filed under Cancer, Crohn's, Healing, Health, stroke

Believing is Seeing

While it may not be sufficient, belief in one’s own ability to recover from serious illness certainly appears to be an important factor. I recently came across an interesting 2004 article by Stanford psychologist Alfred Bandura, Ph.D., in which he argues convincingly that:

“Belief in one’s efficacy to exercise control is a common pathway through which psychosocial influences affect health functioning. This core belief affects each of the basic processes of personal change—whether people even consider changing their health habits, whether they mobilize the motivation and perseverance needed to succeed should they do so, their ability to recover from setbacks and relapses, and how well they maintain the habit changes they have achieved.”

I know that my own recovery from a paralyzing stroke centered on my belief that I had the power to influence my health, and every patient I interviewed for my Own Your Health book said the same thing. Belief may not always work, but it sure gives us a fighting chance! Here is the citation for Bandura’s article, which is called “Health Promotion by Social Cognitive Means.” Health Education & Behavior, Vol. 31, No. 2, 143-164 (2004) DOI: 10.1177/1090198104263660.© 2004 Society for Public Health Education.

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Filed under Healing, Health, stroke

Triumph Over Diagnosis

If you’ve ever heard a doctor deliver bad news, everything about that moment is probably seared into your brain with a permanence that rivals the moment you heard that Kennedy had been shot (if you’re that old) or the Towers had been hit (if you’re not.)

Is it because our doctors are the white-robed, high priests of medicine that their every word, frown, or raised eyebrow has the power to plunge us into the depths of despair? Is this why we scrutinize their phrases and mannerisms for clues about the future of our bodies?

Of course doctors — despite the mystique surrounding them — aren’t the high priests of medicine and they don’t have ultimate knowledge about our destinies. As one very wise doctor once told me, “a diagnosis — or a prognosis — for that matter, is just an opinion.” A well-informed opinion, to be sure, but not one that is carved in stone. If I had believed the neurologists who told me twelve years ago that I would probably never walk or fully use my left arm again, I’d be an invalid today. If my friend Janet had believed the oncologist who told her that she had one year to live, she would not now — ten years later — be writing her memoirs and enjoying her grandchildren.

The stories of triumph over diagnosis go on and on, and every time I hear or write about another one, I am awed anew at the power of the human spirit to overcome medical calamities that look hopeless. When I woke up from surgery with my half my body paralyzed by a stroke, what I thought was a calamity actually turned out to be a gift: It taught me something about myself and launched me on a new professional path. On this path, I have been privileged to meet and write the stories of courageous people who chose to disobey their diagnoses and to forge their own destinies of healing. Their very existence gives hope to all of us.

Of course we need our doctors. They are trained to make diagnoses. But they are not infallible. We should temper their opinions with what we know about ourselves. And they in turn need to recognize that their words are powerful influences on our bodies, minds and spirits, and they should be chosen wisely. We want our doctors to tell us the truth as they see it, but we also need them to be our partners in hope. Because, after all, neither they nor we really know what the future holds.

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Filed under Cancer, Doctors, Healing, stroke

Would You Eat Better and Exercise for a Trillion Dollars?

That’s at least how much this country could save in health care costs and worker productivity if people lived healthier lives and if the health care system helped them do it.

A recent national study announced in a press release by the Milkin Institute reported that 40 million cases of seven chronic diseases — cancers, diabetes, heart disease, hypertension (high blood pressure), stroke, mental disorders and pulmonary (lung) conditions — could be prevented in the year 2023. How? By re-orienting the focus of health care resources more toward prevention and early detection of disease, rather than focusing primarily on treatment. In other words, let’s head off disease before it happens, rather than waiting until we get sick.

The study concluded that this would reduce anticipated treatment expenses associated with the seven diseases and improve productivity by $1.1 trillion that year. The report notes that the most important factor is obesity, which if rates declined could lead to $60 billion less in treatment costs and $254 billion in increased productivity. We know from other sources that the obesity epidemic in this country is already leading to an alarming increase in Type II diabetes — not only in adults, but in children as well.

To reduce the human and economic cost of disease, the Milken Institute calls for:

• More incentives to promote prevention and early intervention, and

• A renewed national commitment to achieve a “healthy body weight.”

“By investing in good health, we can add billions of dollars in economic growth in the coming decades,” said Ross DeVol, Director of Health Economics and Regional Economics at the Milken Institute and principal author of the report. “The good news is that with moderate improvements in prevention and early intervention such as reducing the rate of obesity, the savings to the economy would be enormous.”

We have been hearing from our doctors for years that that by choosing more nutritious food, exercising regularly and reducing the stress in our lives, we can take significant steps toward improving our health as well as preventing disease, suffering and premature death. Now, policy think tanks, government agencies and insurers are telling us that we can save money as well.

So what is stopping us?

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Filed under Exercise, Health, Obesity, stroke

Using the Mind to Free the Body

A lesson in the Alexander Technique is one of effortless ease — almost as if you were floating without the pull of gravity. You want to package up that floating feeling, carry it off with you, and release it the next time you need to trudge up a flight of stairs. If you have the patience to stick with the lessons, you eventually learn to do just that.
I used the Alexander technique as part of my recovery from a stroke, and also as a way to deal with the muscle and joint discomfort of Marfan syndrome, an inherited disorder of the connective tissue.
Developed by a Shakespearean actor named Frederick M. Alexander at the turn of the 20th century, the Alexander Technique has become a way to promote effortless movement in all activities.

The Alexander Technique is based on three main principles:

-Function is affected by use;
-The organism functions as a whole;
-The relationship of the head, neck and spine is vital to the organism’s ability to function optimally;

What is it used for?
Conditions most frequently treated include chronic pain, osteoarthritis, stress and headaches. While there is limited research, it has been found to be effective for these conditions, as well as Parkinson’s disease, breathing problems and anxiety. It is also common for musicians, dancers, singers and actors to use the technique to improve their performances onstage.(See Own Your Health for research citations.)

For more information: http://www.ati-net.com/

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Filed under Alexander Technique, Chronic Pain, Healing, Health, Marfan Syndrome, stroke

Sorry You Stroked, but Heart-wise You’re Fine

“My doctor never looks me in the eye.”

“My doctor never asks how my spouse or family is coping with my illness.”

“I always feel rushed in my doctor’s office.”

Almost every patient whom I interviewed for my books made comments similar to these when they talked about the conventional doctors who were not helpful to them. The comments were most often made about specialists or surgeons whom they had just met, not their primary care doctors, with whom they had longstanding relationships.

One woman suffering from severe chronic pain said of the specialist she consulted, “The doctor kept looking at her watch while she was talking to me. I felt like I wanted to hold onto the hem of her white robe to keep her in the room with me.”

The husband of another patient burst into tears when a doctor finally asked him how he had been holding up. “During the months of my illness, when he was taking over the house and family responsibilities and worrying about me, no one had ever seemed to care about him before,” said his wife.

Patients like these are among the one-third of Americans — with some estimates as high as 60 percent — who seek help from complementary/alternative (CAM) practitioners every year, according to the National Center for Complementary and Alternative Medicine. In addition to providing alternative treatments for chronic pain and other conditions that are less effectively treated by conventional medicine, CAM practitioners and integrative physicians (who combine CAM with conventional care) often provide the compassionate, holistic care that many patients seek, but often do not receive, from their doctors. We expect excellent medical care and advice from our doctors, but we also have the right to more: We should ask our doctors to truly see us for the whole people we are: to look us in the eye and understand our dreams, worries, family and work pressures, preferences and philosophies of life.

The “fifteen-minute” medical appointment is not the problem. While I appreciate that doctors are overburdened and have too little time to spend with their patients, it is possible to make a real, human connection with someone in just a few minutes. I have experienced this from conventional doctors — even in the emergency room of a major academic medical center— so I know it can be done. I have also experienced the opposite: The surgeon who airily told me that my upcoming Marfan-related operation would be “just like having your hair done,” ignoring my terror at the prospect of open-heart surgery. And when I woke up from the surgery with half my body paralyzed, it was he who said, “Sorry you stroked, but heart-wise you’re fine.” He had done his job well; the rest of my life was up to me. With the support of my family and the help of integrative medicine, I recovered completely from the stroke, but not because of him.

We should not hesitate to ask our doctors to appreciate the important roles of our spouses, partners, children and friends in helping us recover from illness or injury. These people are often the best source of support and encouragement, and their love comes for free! At the very least, the medical system should recognize and appreciate their contributions, if not provide them with support as well.

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Filed under Doctors, Healing, Health, Marfan Syndrome, stroke