Time was when you didn't have to guess who was who in a hospital. Doctors were mostly men, and they wore white suits and carried stethoscopes in their pockets. Nurses were women, and they wore starched, white uniforms and caps. Then there were volunteers, who wore candy-striped outfits or pink smocks, and a few clerks in street clothes.
Well, all that's changed. Doctors come in both genders and may or may not wear any special clothes. Nurses may wear colorful smocks, street clothes with white jackets, or "scrubs" once reserved for operating room staff. And there's a virtual army of other professionals and nonprofessionals who are hard to identify.
If you don't have a scorecard, it can be hard to keep track of the players, let alone to be your team's "captain." The good news is that all these members of the health care team, new and old, can help you to treat and cope with a neuromuscular disease. And, in contrast to people with many other chronic diseases, you have a big advantage — the MDA clinic system.
MDA supports 230 hospital-affiliated clinics, most in or near major medical centers, and all can provide you with referrals to any of the health care team members described below.
If you develop an understanding of the team and its members, you'll become increasingly skilled at being its captain — using the various professionals as skilled consultants and respecting their knowledge and experience, while remaining in charge of your own, or your child's, health care.
Even with the best of intentions, today's health care professionals can be so overburdened with insurance regulations, heavy patient loads and administrative duties that things can "fall through the cracks." It's up to you to make sure they don't.
You'll encounter a variety of doctors in your journey through the health care system. Here are some of them.
Many forms of muscular dystrophy and some other neuromuscular disorders, such as Friedreich's ataxia, have significant effects on the heart — a muscle controlled by nerves.
For this reason, you may find yourself consulting with a cardiologist, a doctor who specializes in heart problems. Your neurologist will probably make the referral and should keep in touch with the cardiologist.
Nutritional problems can occur in neuromuscular disorders, particularly if swallowing becomes difficult. Sometimes, special diets are suggested if you're taking certain medications, have certain kinds of heart problems, or are gaining or losing weight abnormally.
The professional title for these practioners is "dietitian," and a registered dietitian uses the initials R.D. The term "nutritionist" is often used in various centers, but it has no specific meaning; the nutritionist may be a nurse or other professional who has a special interest in nutrition.
Many neuromuscular disorders are genetic, so another professional who may help you and your family is the genetic counselor. This relative latecomer to the health care team combines counseling skills with a thorough grounding in the medical and scientific aspects of genetics.
Genetic counselors provide information and supportive counseling, coordinate genetic testing and connect families with community resources. You can be referred to a genetic counselor through your MDA clinic.
Most MDA clinics are directed by neurologists, physicians who specialize in the nervous system and the muscles. (Strictly speaking, the study of muscles is "myology," and the study of the nervous system is "neurology," but there's no medical specialty in myology.)
Neurologists are interested in the diagnosis and progression of neuromuscular diseases. They also prescribe drugs to treat the symptoms or, when possible, the underlying cause of a neuromuscular disorder. They may have experience with other interventions for these disorders, such as surgery, equipment or exercise, but usually these areas aren't their specialty.
Most people are familiar with nurses, but few know how many kinds there are and fewer still can pick them out of a crowd.
The term "registered nurse" (R.N.) means the nurse has had advanced education (usually a college degree) in nursing, including the biological and social sciences as well as nursing skills, and has passed a state licensing exam.
The terms "licensed practical nurse" (LPN) and "licensed vocational nurse" (LVN) indicate a less extensive kind of preparation. You may encounter both kinds of nurses in the clinic or if you or your child should have to stay in the hospital.
There are also nurses who have an even greater scope of practice than the average R.N. These are known as nurse clinicians and nurse practitioners, and both have specialized, advanced education and act independently or nearly independently in the health care system.
Nurse practitioners and clinicians generally have a specialty, such as neurology or respiratory care, but their focus is slightly different from that of doctors in the same specialty. The emphasis is on health maintenance and on helping people make the best use of their abilities and resources, rather than strictly on diagnosis and treatment of disorders. You may encounter nurse clinicians and nurse practitioners in various departments of the medical center.
Doctors specializing in orthopedics concern themselves with the bones and joints and their associated structures, such as the muscles and tendons attached to the bones. Bones usually aren't directly affected by neuromuscular disorders, but they do show the secondary effects of prolonged muscle weakness.
Joints can become "contracted" — fixed in a particular position — and bracing, exercise and sometimes surgery can be helpful in avoiding or minimizing contractures. The spine can also be pulled out of its normal alignment by muscle weakness. This condition, known as "scoliosis," is particularly debilitating and may need surgical correction.
Orthopedists act as consultants for these types of problems. Orthopedics is a surgical specialty, and you'll likely also hear the term "orthopedic surgeon" in reference to these physicians.
A few MDA clinics are headed by physiatrists. These are doctors who specialize in what's known as "physical medicine and rehabilitation."
Their expertise is in helping people cope with the physical effects of a disorder (for example, eating, breathing and moving), and they're generally highly skilled in the areas of exercise, assisted ventilation and equipment use. They usually work with other professionals, such as physical and respiratory therapists.
Neuromuscular disorders have obvious and sometimes devastating effects on mobility and, therefore, on many activities of daily living that require mobility.
Almost every ordinary activity — eating a meal, taking a bath or shower, using the toilet, using a computer, driving a car — can be affected by weakening muscles. And almost every one of these activities can be maintained — although in a modified form — by physical and occupational therapy.
In a general way, physical therapists deal with the large muscles and with physical strength and endurance, while occupational therapists deal more with the small muscles and with the ability to perform skilled tasks. But that isn't universally true, and there's a lot of overlap in the domains of these two professions.
You'll almost certainly encounter both kinds of therapists on your journey through the health care system. You can be referred for therapy through your MDA clinic.
The term "primary care" means care by a professional who doesn't have a specialty in a particular branch of medicine. The primary care physician specializes in care of the whole person. The term is based on the idea that one goes to a primary care provider first and is then referred to other professionals.
Neuromuscular disorders are no protection against common illnesses — such as ear infections and chickenpox in children, or high blood pressure and cancer in adults — so you'll want to have a primary care doctor as well as specialists of various kinds.
As an adult, you can choose an internist or family practitioner. For a child, you may want to choose a pediatrician, family practitioner or adolescent medicine specialist. Pediatricians and adolescent medicine specialists are particularly sensitive to a young person's general growth and development and can help a child through the difficulties of having a chronic disorder.
Many of the skilled professionals who will provide crucial support for you in the modern medical center aren't medical doctors. They're various other types of highly skilled and educated health practitioners.
Because the problems associated with severe disability can often lead to severe psychological distress, you or your neurologist may request a referral to a psychiatrist.
Psychiatrists are medical doctors and, as such, they prescribe medications (for example, antidepressants) and other treatments for mental and emotional disorders. They also talk with patients and family members and may help people put problems in a more helpful perspective.
There are other kinds of mental health professionals, such as social workers, psychologists and mental health nurse practitioners.
Medical social workers found in hospitals and clinics generally focus on the practical aspects of coping with illness and disability, such as insurance reimbursement issues and other financial problems, equipment and housing needs, transportation and home care. They're also trained in counseling techniques. Clinical social workers function more specifically as counselors, dealing, for example, with the psychosocial issues raised by disability.
There is, of course, considerable overlap in the functions of these two kinds of social workers. In the modern medical center, social workers generally cover a "beat," such as outpatient clinics, inpatient areas, home care and so forth.
Muscles that move the limbs and trunk and the nerves that control these muscles are obviously affected in neuromuscular disorders; the muscles and nerves that control breathing are also usually affected, though not quite so obviously.
In recent years, there's been increasing awareness of respiratory problems in neuromuscular diseases, and you're likely to be referred at some point to the pulmonology department at your medical center, at least for an evaluation.
Pulmonologists are physicians who specialize in disorders of the lungs and structures associated with the lungs, such as the muscles that control breathing. These physicians are very valuable additions to the health care team of anyone with a neuromuscular disorder. They generally work closely with respiratory therapists.
Cardiac and respiratory problems are often "silent" and can sometimes go unrecognized until they're very far advanced. In many neuromuscular disorders, it's a good idea to have baseline evaluations of cardiac and pulmonary functioning at the time of diagnosis and to have frequent checkups thereafter.
Physical therapists may help with exercises for the respiratory muscles, but it's really the respiratory therapist in whose domain this kind of treatment lies. Respiratory therapists work closely with neurologists, pulmonologists and other kinds of physicians.
Respiratory therapists can help you develop an approach to supplementing the functions of weakening respiratory muscles, with monitoring and testing, devices that augment the efforts to cough and clear secretions from the respiratory tract, and devices to increase ventilation (the movement of air into and out of the lungs).
They're a crucial part of the team, and your MDA clinic can refer you to them.
Some neuromuscular disorders have a direct impact on speech because they weaken the muscles involved in speaking, and many such disorders affect swallowing. Speech-language pathologists are the professionals who attend to these forms of muscle weakness (including swallowing, although it's not reflected in the profession's name).
New imaging techniques have made diagnosis of mouth and throat weakness much more effective, and these professionals can perform these tests. New electronic devices can help with speaking, and various techniques, including changes in diet, can help with swallowing. Don't overlook these therapists.
Being the captain of your health care team doesn't mean telling the professionals what to do, but it does mean keeping track of who they are, where they are and when to see them.
It also means understanding as far as possible the physiology of your or your child's disorder and which professionals can best help maintain a good quality of life.