If life were "fair" (ha!), then nobody would ever have to deal with more than one medical problem at a time. But as is abundantly clear, the word "fair" isn't in life's vocabulary. So, lots of people coping with neuromuscular diseases also fall prey to other ailments that further compromise their quality of life.
In fact, people with neuromuscular diseases are at greater risk for developing some secondary illnesses, due to the side effects of a sedentary lifestyle, and the mental and physical stresses caused by their disorders.
And ironically, as life expectancy increases, so do the odds of developing secondary medical problems (see "Aging with Neuromuscular Disease"). Neuromuscular disease provides no immunity from arthritis, hypertension, diabetes, osteoporosis or cancer, which can rob people oftheir remaining health even as they're living longer.
In addition, several neuromuscular disorders are associated with specific physical problems, such as heart disorders in some of the muscular dystrophies, tumors in dermatomyositis or bad reactions to anesthesia in other disorders. Be sure you're aware of the particular risk factors for your disease so you can spot symptoms early on.
What's the Rx for these possible health threats? Whatever you do, don't worry about it! The last thing you need is more stress in your life. Instead, take steps now to safeguard, stabilize or improve your general health.
Some steps are obvious (if not always easy). Eat a balanced diet. Get a flu shot. Have regular checkups. Wash your hands. Get enough rest. Don't drink too much alcohol. Stay away from sick people. Quit smoking. Lose excess weight.
But many doctors, researchers and people with neuromuscular diseases also suggest you go beyond the obvious. Life is more than just having a breathing body. Life is also a mental and spiritual state. When people think holistically — caring for themselves as whole people, not just as a collection of physical symptoms — a cumulative good effect seems to result.
In the next several pages, Quest looks at a variety of ways that people with neuromuscular diseases have found to stay healthy and happy. "The Mind-Body Connection" explores some mental and spiritual approaches to well-being. "From the Outside In" is a compendium of things people put into and onto their bodies to relieve pain, maintain strength and flexibility, and strengthen their immune systems.
"The Ins and Outs of Exercise" reports the latest thinking on physical activity. "From the Inside Out" recognizes the impact of creative self-expression on quality of life. And "Health Resources" lists some books, Web sites and articles for more information.
Like prescription drugs advertised on TV and in magazines, these articles come with warnings. First, MDA isn't endorsing or recommending any specific therapy or treatment. Check with your doctor before starting any new practice, no matter how innocent it seems. Your doctor may not be able to tell you if it will help, but she or he can probably indicate if it will hurt.
Further, beware of any treatment that promises to solve all your problems. For the most effective results, a well-thought-out, customized combination of several practices — taken in moderation — is still the best medicine.