Health & Wellness

It has been my privilege during the past 20 years to be the physical therapist for thousands of people with multiple sclerosis. The variety of patients that I’ve seen has been profound, as is expected with MS. However, it has always impressed me that certain people with MS always seem to do a little better than others, regardless of the severity of the disease. These people have always stood out as having a better handle on their MS, and seem to have a better and more satisfying life despite the disease.
 
I have always had a deep curiosity about these “successful MSers.” After observing them during the last several years, I have noticed that they often share many of the same habits and characteristics. Accordingly, I have tried to make a list of these characteristics below, in the hopes that those struggling with their MS can adopt some of these and benefit from the learning and experience of others.
 
1. Be active
 
Too often I have seen people take a passive role in the treatment of their MS, saying to their doctor or therapist, “Just tell me what to do; you’re the doctor and you know best.” I am not suggesting that people with MS become adversarial with their health care providers. However, I do think that the better educated they become about all facets of their disease, the more meaningful a role they can play in it.
 
2. Maintain an active lifestyle
 
A portion of the weakness and fatigue that is seen in MS is not due to the disease itself, but to the sedentary lifestyle that people with MS often adopt. The sedentary lifestyle may be adopted for many reasons, such as depression over the diagnosis, experiencing overwhelming fatigue when a more active lifestyle is attempted, or even being misinformed that a sedentary lifestyle is recommended for people with MS. This type of lifestyle can lead to a vicious circle of weakness and fatigue due to non-use. The solution to this is to try to become more active. Simply adding a small amount of movement to your daily routine can be a good start, either by joining an exercise program given by a fitness professional with MS experience, going on a social outing, or even by trying to leave your house more often. The important thing is to start with something, however small. 
 
3. Be aware of the psychological issues that result from the physical ones
 
Most people associate MS with the physical disability that it causes. However, the resulting emotional trauma that occurs due to the loss of mobility, as well as the very knowledge that one has a progressive neurologic condition for which there is currently no cure, often results in a psychological burden that adds to the overall effect of the disease. People with MS who pay attention to this issue, either through individual or group counseling, support groups, or other means will have to struggle less with the emotional burdens associated with MS. This energy can in turn be utilized to help achieve other life goals.
 
4. Assemble a team of specialists 
 
MS is a multifactorial disease, meaning that it can create many symptoms. Therefore, you should ideally have a team of specialists to address all the individual factors that your disease entails. This not only includes a neurologist specializing in MS, but also an internist who is familiar with the disease, a physical and occupational therapist to deal with mobility issues, and a speech language pathologist to assist with speech and swallowing issues. Depending on the specifics of your MS you may also need a urologist, a gynecologist, a psychiatrist, a social worker, and an orthopedist. These people should be chosen with specific consideration of their knowledge of MS.
 
5. Exercise to address specific aspects of your disease, not just for wellness/fitness
 
Although exercise is an important aspect of MS management, it is important to differentiate exercise for general health and wellness, and exercise intended to address specific issues that are due to MS. For example, exercising your upper body may help your overall arm strength, but will do nothing to improve walking difficulties due to a foot drop. This is not to say that exercising for wellness is not indicated for MS, quite the contrary. A great deal of the secondary weakness and fatigue that occur as a result of MS can be offset by an exercise program. However, for specific deficits caused by MS, there must be specific exercises tailored to them.
 
6. Think long-term
 
Most people with MS appropriately focus on how the disease is affecting them in the present. However, because MS is a disease that will occur over a lifetime, planning for a future with MS is necessary. How the disease might affect your employment, retirement, family planning, and finances should be taken into account. Although predicting the future is impossible, planning for the possible effects of MS is. This can include affects on mobility, economic issues, medication needs, and much more. Anticipating these issues, rather than responding to them after they occur, will make them less overwhelming and cause less distress and disruption.
 
7. Have goals outside MS
 
MS can be an all-consuming disease if you let it. It is important to have an identity apart from it. Having goals, dreams, and aspirations that are separate from MS asserts that one is a person with a variety of interests. Having goals is a unique aspect of being human. It motivates and defines us. This is not to say that successfully managing one’s own disease is not a worthy goal. However, it should not be the only goal.
 
MS is a disease that will affect those who have it in multiple and often unpredictable ways during a lifetime. This does not mean that we are powerless in the face of the disease. People who have had powerful and meaningful lives in spite of the MS are often able to do so because they have used strategies which increase their sense of control over the disease, and therefore over their lives. I urge all people with MS to consider how these qualities can become useful for them. 
 
Dr. Herb Karpatkin is a physical therapist with more than 20 years experience specializing in evaluation and treatment of persons with MS. He is owner of a small, private practice specializing in MS, and is an assistant professor of Physical Therapy at Hunter College, City University of New York and a member of the MSF’s Medical Advisory Board. He has written and lectured extensively on topics related to MS exercise, and rehabilitation.
 
(Last reviewed: 3/2012)