Staying Healthy Inside and Out —
The Mind-Body Connection
The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly. — Buddha |
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by Christina Medvescek
Any situation you can't control is stressful. By definition, this includes coping with a neuromuscular disease.
As our minds worry, fret, stew, deny, rage and obsess, our bodies pour out chemicals like cortisone and adrenaline, which are powerful immune system suppressors. Stress reactions also seem to be hard on the heart.
The bad news, supported by numerous studies, is that unchecked mental stress and negativity can impair your health, reduce your joy and possibly shorten your life.
The good news is that the mind-body connection also works the other way. When you find ways to cope effectively with stress, you may actually strengthen your immune system. Research strongly suggests that people who deal effectively with stress resist sickness, heal faster and live longer.
A Fighting Spirit
Dealing effectively with stress doesn't mean acting like Little Mary Sunshine. Sadness and fear are natural, reasonable responses to upsetting events. Rather, it means having a resilient, flexible spirit — sometimes called "a fighting spirit" — and confidence that somehow you'll be able to cope with challenging events.
"From a clinical perspective, it's been my impression that people with positive attitudes do the best overall," reports John T. Kissel, co-director of the MDA clinic at Ohio State University Hospital in Columbus. But don't assume that a good attitude is a cure, he warns, noting that some people who initially display a fighting spirit lose their spark when they don't get better.
"If the only purpose of a positive attitude is to make the disease better and then you don't get better, a patient's whole coping mechanism can come down like a house of cards," Kissel says. "The point of having a good outlook is almost independent of its effect on the disease. If you have a good attitude, things just seem to be good. Isn't that the whole point?"
He finds that people who look for the strength to cope rather than for a cure tend to do the best physically and mentally.
"When you are diagnosed with a chronic illness, it's a good time to do a mental-emotional-psychic-spiritual assessment." |
For these reasons, "it's very important to attend to your spiritual and emotional well-being," emphasizes Marion Brandis, nurse-clinician at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia Presbyterian Medical Center in New York. "When you are diagnosed with a chronic illness, it's a good time to do a mental-emotional-psychic-spiritual assessment."
There are many paths to enlightenment, say the sages. Here are a few ways in which people with neuromuscular diseases maintain their fighting spirits.
Meditation
It's hard to believe that simply sitting quietly and breathing in and out can be powerful medicine. But meditation is gaining credibility in medical circles as an effective element in pain reduction and stress management.
Studies show that meditation is useful in helping to lower stress hormones, blood pressure and heart rate, while improving blood circulation. It also helps decrease symptoms such as achiness, mild depression, insomnia, tension headache, irritable bowel syndrome and premenstrual syndrome.
"Meditation and prayer have helped me remain calm when my breathing becomes impaired," says Lori Fisher of Haymarket, Va., who has respiratory weakness as a result of the neuromuscular diseases myasthenia gravis and dermatomyositis.
"Instead of panicking, which makes it worse, I remain calm and rest," Fisher says. "My prayerful meditation practice has strengthened and sustained me through many hospitalizations, surgeries and endless hours waiting for transport, alone in hospital hallways."
The main requirements for meditation are time (at least 20 minutes a day) and a quiet spot, which makes it a natural tool for many people with disabilities. No particular spiritual or religious orientation is necessary. Although very little training is required, it can take weeks, even years, of practice to feel comfortable being still and letting go of your thoughts.
But it's worth it, says Brandis, who suggests meditation to some of the patients she sees at the MDA/ALS Center.
"Meditation is a way to affirm that being is just as important as doing. We all identify as people who do things, who control our worlds. There is tremendous value in finding that place of calm and self-love that you can attain in meditation."
Yoga
 More than just a stretch: June Colton finds that a daily modified yoga and exercise routine makes her inclusion-body myositis easier to handle. |
The Sanskrit word yoga literally means "union," and that describes the goal of this ancient practice: a harmonious union between mind and body.
Although advanced practitioners twist themselves into pretzel shapes, yoga can be modified for anyone in any shape. It has been shown to provide the benefits of meditation, and to improve strength, flexibility and posture.
June Colton practices a modified yoga/exercise/ meditation routine for one to two hours, four or five times a week, usually in the morning, when her energy level is highest. She does upper- and lower-body exercises while seated in a chair and on the floor. The 71-year-old Pasadena, Calif., resident has inclusion-body myositis, and knows without a shadow of a doubt that the practice helps her.
"If I don't do it, I become weak, I don't think as well or quickly, my body becomes stiff and it's difficult to walk," she says. "It's my mind working with my body that makes me get through the day without falling."
The yoga component of her routine involves holding different stretches; she can no longer do balancing poses. She also lies flat with her arms over her head, pressing her spine to the floor.
"My spine is no longer straight," she explains. "This realigns my back and helps my posture."
"It's my mind working with my body that makes me get through the day without falling." |
Yoga gives more than physical relief, she says. "The exercise clears my mind, helps me cope and gives me a better attitude."
Faith and Prayer
"I don't think I'd be here without prayer." For Lori Fisher — and those for whom spirituality is a priority — it's just that simple.
A songwriter, singer and "currently one sick puppy," Fisher says prayer has helped her through frustration and frightening, life-threatening symptoms. Because prayer has been so powerful in her life, she created a prayer page on her Web site, Waterfall Hill Music Songwriting Ministry (www.lorifisher.com), in order to share that experience with others.
"I believe prayer can help us to reach a place where we can be relatively happy and at peace with whatever we are handed." |
"I'm not sure I agree with those who say things like, ‘If you were right with God, you'd be healed,'" she says.
"God has a plan we sometimes cannot understand. He can work to touch others through our own circumstances. I believe prayer can help us to reach a place where we ‘give thanks in all circumstances' and can be relatively happy and at peace with whatever we are handed."
Prayer and spirituality have been put under the microscope. Studies over the past decade suggest that prayer and regular religious observance contribute to lifespan and general mental and physical health.
But the scientific jury still is out on the power of prayer to heal. Almost 200 studies of "remote healing" (healing that occurs as a result of being prayed for by others) have yielded contradictory results — some say it's real, some say it's not.
Other Approaches
If none of these methods speaks to you, then just go fly a kite — or do something else that brings you enjoyment and improves your attitude. Attitude is the key to the mind-body connection.
Fun and Pleasure: A 21-year study in Germany by Ronald Grossarth-Maticek found that feelings of pleasure and well-being were excellent predictors for longevity. More than 3,000 healthy people in Heidelberg, Germany, were given a "Pleasure and Well-Being Inventory" in 1973, then recontacted 21 years later. High scorers were much more likely to be alive and well.
 Words to live by: "Get over it" and "never give up" have kept the Price brothers going strong for over 38 years, despite their Duchenne muscular dystrophy. |
A recent study in Sweden of almost 13,000 people found that those who regularly attended cultural events (concerts, theater, art exhibits, etc.) were twice as likely to be alive nine years later as those who rarely did.
Pets: Opera not your thing? Tell it to a dog. Numerous studies have shown that contact with pets can help lower blood pressure, decrease anxiety and depression, and even help people heal faster after surgery.
Gratitude: In a recent controlled study by Robert Emmons, psychology professor at the University of California at Davis, people were asked to keep weekly gratitude journals, writing down what they were thankful for. People who gave thanks said they felt better physically and were more optimistic, alert and energetic.
Laughter: Seriously, laughter is good for you. It's "a form of internal jogging," said the late guru of laughter therapy, Norman Cousins. "It moves your internal organs around."
Numerous studies have confirmed the wisdom of Proverbs 17:22: "A merry heart does good like medicine."
"Faith in God, a good family and a sense of humor can get you through anything." |
"A good sense of humor is second only to our faith as being essential to our survival," say Karl and Troy Price, 40 and 38, of Deland, Fla. The brothers, who have Duchenne muscular dystrophy and use ventilators, lost an older brother to the disease.
"Just like anyone else, we get very frustrated and mad sometimes. But our motto in life has always been ‘get over it' and ‘never give up,'" they say.
"Sometimes people see us and wonder how we can be so happy. Our answer for them is that faith in God, a good family and a sense of humor can get you through anything. We thank God every day for the tools that make it possible for us to lead the happy lives that we do."
Prayers for Mattie
There's no doubt in Jeni Stepanek's mind that prayer can heal.
Jeni, 42, of Upper Marlboro, Md., is the mother of 11-year-old Mattie Stepanek, MDA's 2002 National Goodwill Ambassador and a best-selling poet. Both mother and son have mitochondrial myopathy, and Jeni lost three other children to the disease. She still has Mattie, thanks in part to the power of prayer, she believes.
Last summer Mattie had "both feet in the grave" because of unchecked tracheal bleeding. Doctors warned that any sudden gust against his severely eroded trachea — a laugh, a cough — could cause his windpipe to collapse, leading to death within 20 minutes.
"He sat in the hospital for two months waiting for this to happen," Jeni says, noting that the anxiety itself was killing.
"We started praying about it. I said, ‘Mattie, just pray that if there is something you can do, you'll be able to do it. Pray that you can at least live with what life you've got.' He made the decision in August that he wanted to come home to die."
While packing up to go home on a Sunday morning, the Stepaneks prayed together again. Mattie picked up a relic of Andre Bessette, a Catholic lay brother who is a candidate for sainthood, and touched it to his trachea.
Mattie prayed: "Dear God, I've decided to go home. They think I'm going home to die. Please let me go home to live. Whether I live one day or 10 years, please let me spend every minute until I die living and celebrating and spreading my message of hope and peace. I'm putting it all in your hands. You decide how to handle it, but I want to go home to live."
And the bleeding stopped at 11:15 a.m. on that Sunday morning. The hospital officially labeled it an "unexplained spontaneous recovery."
In the 10 months since then, Mattie has gone on to spread his message around the world. Almost overnight he went from being an amateur writer to a best-selling author with a contract with a major publishing house. He has been interviewed extensively by the national media and receives mail from all over the world.
Prayer touched Mattie again in December 2001, when television talk show host Oprah Winfrey asked her huge audience to pray that an open sore on Mattie's head would heal. The sore was so deep it was threatening to expose his brain to infection, but surgery was a risky option because of Mattie's sensitivity to anesthesia.
After Oprah started her prayer chain, the sore became 95 percent healed over the next several weeks.
"Coincidence?" asks Jeni. "The doctors have said they can't explain it."
She adds, "I believe prayer is powerful. I don't believe that prayer alone can solve all problems. I think that prayer brings out the best in medicine.
"There is something about prayer that makes you calmer, more focused and more optimistic. And being optimistic and wanting to be better is a very powerful thing.
"I don't pray for God to magically heal Mattie," his mother says. "I pray that Mattie can live long enough to fulfill his purpose on Earth. When he dies, I know it will be God's will." |
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