Living well with MS

By Stanley Cohan, M.D., Ph.D., neurologist and medical director of Providence Multiple Sclerosis Center

Here in the Pacific Northwest, just about everyone knows someone with multiple sclerosis. The disease strikes more people here than in nearly any other part of the country. It's not clear why it is so prevalent here, but it is clear that MS affects us all – either directly, or indirectly through our close friends, family members, neighbors and co-workers who have the disease. With that in mind, it's helpful for all of us to gain a better understanding of the prospects for living well with MS.

A giant leap forward

In the last two decades, new medications have improved life dramatically for people with MS. Before the mid-1990s, there were no medications of proven value for managing this degenerative disease, which causes the immune system to mistakenly attack the brain and/or spinal cord. Today, safe, effective medications are significantly improving relapsing-remitting disease, the most common form of MS, reducing the attacks that affect vision, balance, muscle strength, sensation and concentration, and in some cases, reducing the progression of disability.

While effective medications have yet to be discovered for the progressive, more disabling forms of the disease, multiple clinical trials of potential new treatments are currently under way.

Proactive management of MS has led to a fundamental change in the trajectory of disease for many people, and the risk of losing control of the disease has been reduced. A great number of people who, in the past, would have had to resign themselves to lives limited by disability, now are remaining in the work force, raising families and maintaining active social lives. With less fear of serious and inevitable life changes, many now can turn their attention to other issues to improve the quality of their health and their lives. Here are a few of them.

Treating specific symptoms

When medications aimed at controlling MS fail to improve certain symptoms, other targeted treatments may help. For example:
  • Bladder control and, less frequently, bowel control, can be a problem for many people with MS, particularly when the spinal cord is affected. Fortunately, many effective medications and exercises are available, and some physicians, especially urologists and gynecologists, have developed special expertise in this area.
  • Anxiety is another common problem that can be addressed, in most cases, with medication and counseling.
  • Sexual performance problems, which can be an issue for some people, can be overcome with the help of medication and specialized counselors.
Recognizing and treating depression

MS can directly cause depression by attacking areas of the brain that regulate mood and feeling. Many people with MS don't realize that their symptoms of sadness, irritability, fatigue and difficulty concentrating may be caused or worsened by depression. This is an important issue that deserves a candid conversation with a doctor, because people with MS respond very well to antidepressant medications and counseling.

Eating well

Scientists have studied the effects of a very low-fat diet on MS, and to date, there has been no evidence of direct benefits. However, people on these diets have enjoyed excellent cardiovascular health, which underscores the importance of a healthy diet in general. Eating right and controlling calories gives people with MS a fighting chance to avoid adding to their challenges with additional serious problems such as obesity, diabetes, hypertension and related diseases.

Getting adequate vitamin D

Recent scientific evidence suggests that vitamin D plays an important role in the development and function of the immune system. And MS is, at least in part, an immune system disease. Studies show that in populations where vitamin D levels are low, the risk of developing MS is higher. Babies born to women who have low vitamin D levels also appear to have a greater risk of developing MS. This is of special importance in the Northwest, where reduced sunlight exposure reduces the body's ability to manufacture vitamin D. Whether or not you have MS, it's important to work with your doctor to track your blood levels of vitamin D and take supplements as needed.

Steering clear of cigarettes

Cigarette smokers have a much greater risk of developing MS than nonsmokers. Studies also suggest that people who smoke after they've developed MS have a more aggressive form of the disease. So in addition to all the other negative effects, the evidence is very clear: Tobacco use has a direct link to vulnerability for MS.

Staying as active as possible

Physical activity reduces the risk of developing other diseases, improves sleep and mood, and helps keep weight under control, which can be very helpful for people with weak legs and balance problems. All people should exercise to their fullest reasonable ability, and everyone can exercise to some extent. I have yet to see a patient, even with grave disability, for whom some physical activity, however limited, was not possible. There are buoyancy devices to help people walk in cool-water pools, upper body exercises for people who can't use their legs, and several devices that can be purchased, rented or borrowed to assist with home exercise programs. If physical limitations are keeping you from exercising, I encourage you to consult with a physical therapist who can help you learn new ways to move your body and enjoy the benefits that come with some activity.

Understanding that MS is not a barrier to pregnancy or parenting

Multiple sclerosis should not stand in the way of any woman who wants to have children. MS does not prevent pregnancy, interfere with pregnancy or get worse during pregnancy. In fact, in the overwhelming majority of cases, MS actually gets better during pregnancy. Ideally, women who are planning a pregnancy should work with their neurologist and obstetrician to get their disease under control and to come off of their medications before conceiving, since some medications may affect pregnancy. A discussion about breastfeeding and medications is also important.

Beyond childbirth, MS should never be viewed as a barrier to being a good parent, even in the face of disability. I have known many people who had parents with physical impairments – some very significant – and these men and women never felt that the quality of their lives had been diminished in any way by having parents who were physically disabled. In fact, they deeply admired their parents for their courage and felt enriched by the experience.

Knowing where to find help

MS can be an isolating disease, but that can be remedied. Even for people who live in remote communities, help and support are readily available through organizations such as the National Multiple Sclerosis Society and its Oregon chapter, the Multiple Sclerosis Association of America and the Multiple Sclerosis Society of Portland. Each of these provides a home base for support and information on a wide variety of issues, from financial support and transportation assistance to information about doctors and medicines. MS care centers, such as Providence Multiple Sclerosis Center, are a major part of this supportive network, as well.

Financial resources exist in every state to help with the cost of medications, physicians and transportation, so there is no reason for any person in America who has MS to be unable to get the help that he or she needs. The organizations mentioned above can direct you to resources in your area.

There is no question that living with MS can be physically, emotionally and socially challenging. But never resign yourself to letting this disease beat you, because treatments and support are improving each year. Newer medications have recently been approved, and others are being investigated to further improve control of this disease. Help is out there, and much more is coming.
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