Category Archives: Marfan Syndrome

Healing Hands: Physical Therapy for function, mobility, and comfort

I  have discovered a unique, highly effective form of physical therapy that combines the best elements of personal training with muscular therapy. Valerie Ruccia Eagan has developed her own brand of physical therapy that uses hands-on techniques, core- strengthening, and flexibility-building exercises, as well as mind-body energetic work. Her method cuts to the root of physical pain and mobility problems to provide deep and lasting healing.

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Filed under Aging, chronic illness, Chronic Pain, Healing, Marfan Syndrome

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

Healing Arts for Marfan and Chronic Pain

I recently helped to organize a Healing Arts workshop for the National Marfan Foundation annual meeting, which was held in Boson this year. More than 30 participants heard and asked questions of a panel of complementary/alternative practitioners who discussed managing the symptoms of Marfan syndrome—particularly chronic joint pain—with Tai chi, the Alexander Technique, acupuncture, Traditional Chinese Medicine (TCM), nutrition, and craniosacral therapy. Combining alternative treatments with conventional care is called “integrative medicine,” and putting together your own personal healing combination is an excellent way to take responsibility for your health. These healing modalities have applications for anyone suffering from chronic pain.

The workshop began with Tai chi and Alexander teacher Jamee Culbertson leading us in the opening movements and breathwork of a Tai chi form that is thousands of years old. Research has found that these ancient, graceful, meditative movements improve balance and reduce falls. As we breathed deeply and moved slowly in unison, the room seemed to transform into a kind of “sacred space,” as the group united with a shared purpose and energy. With two volunteers, Jamee then demonstrated how the Alexander Technique reduces pain and eases body movement through simple awareness of habitual actions that may be restricting activities. Both Tai chi and the Alexander Technique are gentle, non-invasive practices, and do not stress joints or ligaments.

Eurydice Hirsey, a trained chiropractor and craniosacral therapist, then talked about the use of craniosacral therapy to ease pain and improve movement by enhancing the circulation of cerebrospinal fluid. This is done through gentle touches on the head and sacrum, following the body’s own natural rhythms and movements, without force or pressure. While chiroporactic may not be indicated for most people with Marfan syndrome, the light touch of craniosacral therapy can ease tight muscles and reduce pain, even in those who have had spinal fusions, by focusing on other areas of the body where movement is possible.

Acupuncturist and researcher Stephen Cina shared his orthopedic investigations into the nature of connective tissue and its possible relationship to the meridians (energy pathways) used in Traditional Chinese Medicine. A practitioner either inserts tiny needles into “points” on the skin that correspond to the energy meridians (the needles are usually painless), or applies pressure with the hands (acupressure) on these same spots, in order to reduce pain. And naturopathic intern Amanda Daeges–who has Marfan syndrome, talked about maintaining integrity of connective tissue through what we eat and drink: specifically whole foods and whole grains that include nutrients and trace minerals. She also stressed the importance of drinking enough water. (Divide your body weight in half to find out how many ounces of water you should drink each day.)

All of these complementary modalities (and many more) are described in detail here, has well as profiles of practitioners and personal experience stories.

VERY important: Before you try any complementary/alternative practices, always check with your doctor.

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Filed under acupuncture, Alexander Technique, Chronic Pain, Health, Marfan Syndrome, Tai Chi, Traditional Chinese Medicine

For a Friend Who Died of Marfan Syndrome

Cleaning out an old filing cabinet, I came upon a poem I had written 24 years ago, just after I had given birth to my first child, Benjamin. This spring, he will be married. His younger sister, Elizabeth, will be the maid of honor.

For a Friend Who Died of Marfan Syndrome

Let my baby be hers, too

Let him have grown in her virgin womb

suckled at her empty breast

Let me love him for her

who yearned to create

Let me rejoice in his beauty, the small exploring hands

the fervent mouth

the wetness of which

she will never feel

Let me tingle with the

joy, the freshness, the pain

of living with the same disease that killed her

Let me do this in her honor, in her memory

Her time is over

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Why I Like Tai Chi

The slow, flowing movements look like a dance, but it is what goes on inside the body that makes Tai chi different: During a class recently, I felt as if my body were getting hooked up to a universal “filling station” and being replenished with energy. The result? Better ease of movement, increased flexibility and a sense of peaceful well-being. I do a “short form” almost every morning that takes all of ten minutes, one of the helpful ways I have found to live with Marfan syndrome.

Tai chi originated thousands of years ago as part of the ancient system of Traditional Chinese Medicine. The movements have their origins in martial arts, but are performed slowly, with controlled breathing and an awareness of the flow of energy inside the body. Tai chi has been called “moving meditation.”

Studies have found that Tai chi strengthens the immune system and can help with pain caused by osteoarthritis of the knee. In other research, Tai chi has been found to improve balance and coordination in older people, and reduce falls. It can also help with osteoporisis by  increasing bone density.

All in all, not a bad ten-minute investment of time. Anyone else have Tai chi stories to share?

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Filed under Aging, Chronic Pain, Healing, Health, Marfan Syndrome, Tai Chi, Traditional Chinese Medicine

Restoring the Rhythm of the Body

If your health problems include chronic pain in your joints or back, headaches, or ear infections, you might benefit from a craniosacral therapy — after consultation with your doctor, of course. During a session of craniosacral therapy, you lie on your back, fully clothed, on a cushioned table. As the practitioner places her hands under your back on the connection between your head and neck, there is no sensation of “forcing” a movement. “I try to detect and focus on the deepest reservoir of the body, below the ‘radar’ of the conscious mind and even of the muscle,” says Dr. Eurydice Hirsey in Own Your Health—Pain: back pain, arthritis, migraines, joint pain and more, by Adam Perlman, MD, MPH. “I often just follow the body’s own impulse, gently helping it to undo the resistance in its own way, without pushing on the muscles or joints,” says Dr. Hirsey, a chiropractor who is also trained in craniosacral therapy. “This is how craniosacral work differs from chiropractic or even massage, where the practitioner might force or create a change in the body. It is the patient’s own response to the practitioner’s gentle touch that provides the release.”

When the muscle resistance does finally relax, the sensation is one of deep release from a tension you might not have been aware of. “For some people this can be an enormous, sometimes volcanic release,” said Dr. Hirsey. “They may cry, laugh or feel anger, often depending on whether the physical restriction in the body came from an emotional trauma.”

Craniosacral therapy, which can be performed by other practitioners, such as chiropractors, massage therapists, nurses and physical therapists, grew out of the system of osteopathy and treats the central nervous system and its relationship to the spinal cord in a similar way. Practitioners say that craniosacral “rhythm” within the body comes from the regular pulsing of the liquid — called cerebrospinal fluid — that bathes, nourishes and protects the spinal cord. It is through the regular pulses of the cerebrospinal fluid that the brain transmits nerve messages to keep the body alive and functioning.

Blockages or restrictions in the craniosacral fluid can result from tension in the muscles or “fascia,” the tissue just under the skin that overlies muscle and some organs, like a kind of inner “sleeve,” says Dr. Hirsey. “As I place my hands on the spine and head of my patient, I can often feel enormous resistance to the flow of cerebrospinal fluid, caused by blockages in the tissue,” she explains. “Any injury or trauma that alters or minimizes the flow of this fluid can cause pain and have a negative effect on our well-being and health.”

No matter who the practitioner is, the most important component in effective treatment is that the practitioner take into account the condition of the entire body, and that the technique is never used to replace necessary conventional treatment.

What’s the Evidence?
No controlled trials of craniosacral therapy seem to exist, according to one author, Dr. Edzard Ernst, who surveyed the literature, pointing out that Dr. Upledger himself, an osteopathic physician who developed the technique, does not cite them in his own writing. “Even though small movements between cranial bones are possible, there is no good evidence to suggest that restrictions of these movements have any health related relevance,” writes Ernst. -Ernst, Edzard, ed. The Desktop Guide to Complementary and Alternative Medicine: An evidence-based approach. Harcourt Publishers Limited 2001. P. 48.

However, practitioners, patients and parents claim that the technique is beneficial for problems such as birth trauma, chronic pain, cerebral dysfunction, cerebral palsy, colic, depression, dyslexia, ear infections, headaches, learning disabilities, Méniere’s disease, musculoskeletal problems, migraine, sinusitis and stroke. Young children are believed to respond particularly well. Personally, I have found regular craniosacral treatments helpful in dealing with the chronic musculoskeletal pain of Marfan Syndrome.

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Filed under children's health, Chronic Pain, cold shower health benefits, ear infections, Headache, Healing, Health, Marfan Syndrome

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