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Mobility Loss Impacts Quality of Life for Epilepsy Patients By Elizabeth Stump Mobility and gait problems appear

to be the major problems affecting the quality of life for patients with multiple sclerosis, according to the results of surveys, conducted online by Harris Interactive on behalf of Acorda Therapeutics, Inc., and the National MS Society, and released in March. Among the 1,011 people with MS surveyed, 64 percent had trouble walking, were unable to walk, or lost their balance at least twice each week. Furthermore, 74 percent of those patients with walking difficulties reported disruption of their overall daily life. The most common concerns among people with MS when they are first diagnosed are restrictions on daily activity (78 percent) and their diminished ability to work (76 percent). But MS experts said the survey results come as no surprise. The findings are important, however, because they quantify the significant impairment of mobility issues on all aspects of life for MS patients, from household chores, to finances, to family vacations. Respondents also included 317 caregivers: 91 percent— most often a family member or spouse — stated that they were coping well with their caregiving responsibilities, and 85 percent said caring for a family member or friend made them a stronger person. While the vast majority of patients report mobility impairment as their most difficult aspect of MS, 39 percent of patients and 49 percent of caregivers reported that they rarely or never discussed mobility issues with a doctor. Sean J. Pittock, MD, a specialist in autoimmune neurology at the Mayo Clinic in Rochester, MN, noted that while the reasons for this were not evaluated further, MS is characterized by multiple different signs and symptoms, a disorder “in which every patient behaves a little differently, so it can be difficult for a neurologist to address all the complexities of multiple sclerosis in a consultation.” With his patients, he discusses positive thinking and diet, fitness, and exercise, referring patients with ambulatory disability to his clinic’s physical medicine and rehabilitation team. Gary Birnbaum, MD, clinical professor of neurology at the University of Minnesota School of Medicine in Minneapolis and the director of the Multiple Sclerosis Treatment and Research Center at the Minneapolis Clinic of Neurology in Golden Valley, MN, said he sees similar trends among his own patients. Dr. Birnbaum noted that while all of these issues should be addressed by the neurologist, time constraints and insufficient awareness of the complexities of MS, particularly for neurologists who see a small population of MS patients, can get in the way. “Unfortunately, given the constraints of medical economics, the time issue is not easily resolved,” he said. But, he added, continuing education can help with gaining a better understanding of the complexity of the disease.

The experts noted that the survey was performed on representative samples of MS patients and there is always uncertainty in self-reporting situations like on the Internet. However, the survey findings highlight the need to emphasize the “importance of education, counseling, and aggressive management of these issues in early and ongoing neurological consultations,” said Dr. Birnbaum. Maintaining cognition and ambulation should be the major therapeutic goals of all neurologists caring for MS patients, who may require assistance from physical and occupational therapists and orthotists, he said. Dr. Pittock noted that it is also important to emphasize that many patients with MS continue to work full-time and have no ambulatory problems. “Patients with mobility loss or walking difficulty are most concerned regarding their loss of independence, and caregivers must work to maximize the patients’ independence since this is closely related to overall quality of life,” he concluded.