Neuropsychology and multiple sclerosis: providing compassionate, involved care
About one million people are living with multiple sclerosis (MS) in the United States. They may experience one or more of a variety of symptoms, that can affect them physically, emotionally, mentally, psychologically, and/or in ways that others can’t see (the “invisible” symptoms of MS). The types and severity of symptoms differ greatly between people with MS, so one person’s experience with this disorder may be very different from another’s. Some physical symptoms include balance problems, bladder and/or bowel dysfunction, mobility and walking issues, spasticity (stiffness), speech difficulties, swallowing disorders, and tremor. (Source: Multiple Sclerosis Association of America.)
As a neuropsychologist with the Department of Rehabilitation Medicine, James Porter (pictured here), PhD, ABPP-CN, treats patients with multiple sclerosis. Following are his thoughts about working with them.
Understand the impact
The primary role of a neuropsychologist is to help understand the impact of multiple sclerosis upon daily functioning, in terms of cognitive abilities and functional management. We do this through batteries of tests assessing things such as learning, memory, mental speed, concentration, and problem solving. We also assess areas of emotional functioning, stress management, and other behaviors. Our evaluations help to understand if the disease is following different courses (e.g., relapsing-remitting, secondary progressive), and to help patients understand if they need accommodations in work, school, or home activities, or perhaps even need to apply for disability benefits.
One thing that is important to keep in mind for multiple sclerosis patients is that they experience mood and anxiety problems at greater rates compared to the general population and compared to patients with other neurological illnesses. The neuropsychologist needs to carefully think about the presence and severity of emotional difficulties, and the cyclical interactions MS patients have with fatigue, physical symptoms, cognitive lapses, and other day-to-day concerns.
They’re not to blame
Stigmatization of mental health troubles is still widespread and making sure that patients do not feel blamed or disparaged for their symptoms is very important. MS is a disease that takes time to correctly diagnose, and it is common to hear about how past providers were dismissive of concerns or suggested symptoms were just due to anxiety or were “all in your head.”
The increased rates of mood, anxiety, fatigue, and sleep troubles are part of the neurological illness in multiple sclerosis. We never want patients to feel that they are somehow weak or lazy for experiencing them. We want them to know that there are helpful treatments available that can make life more manageable. Family and caregiver education can be an important part of this work, to make sure patients are getting well-informed support at home, too.
Hope for the future
Although I am not doing any research in MS at this time, I am however, quite interested in recent studies that have shown a key role for exposure to Epstein-Barr viruses in the chain of events that produce MS. That discovery offers hope that we might find ways to break the chain at that step and reduce the overall incidence of the disease.
I'm also interested in a very recent press release from the University of Virginia suggesting positive benefit for mood, fatigue, and neurological functioning through dietary changes, having patients follow a low-carb/high-fat ketogenic diet. That particular study is still in the peer review stage and will of course need replication and extension, but it is heartening to think we might have more tools to make patients' lives less troublesome and more enjoyable.