From Our 2008 Archives
MS Patients Say Mobility Is Top Problem
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But Surveys Show Many Multiple Sclerosis Patients Don't Discuss Walking Trouble With Doctors
Reviewed By Louise Chang, MD
April 10, 2008 (New York) — The majority of people with multiple sclerosis (MS) say that trouble walking significantly affects their overall quality of life, yet many do not discuss their mobility issues with their doctors, according to two surveys.
The polls were conducted by Harris Interactive on behalf of Acorda Therapeutics Inc. and the National MS Society.
"We didn't expect to see that people who have mobility issues are not discussing them with their doctors because there are so many possibilities in terms of addressing mobility problems," Nicholas LaRocca, PhD, tells WebMD. LaRocca is the vice president of health care delivery and policy research at the National MS Society, based in New York City.
MS affects the central nervous system (the brain, spinal cord, and optic nerves). It results in loss of muscle control, vision, balance, and sensation. In MS, the body's own immune system attacks myelin, a fatty substance that surrounds and protects the nerve fibers in the central nervous system. Symptoms can range from mild, such as numbness in the limbs, to severe, such as paralysis.
The new polls comprised 1,011 U.S. adults with MS and 317 of their care partners. The participants were surveyed online between Jan. 28 and Feb. 25.
Almost two-thirds of people with MS experience trouble walking, the inability to walk, or the loss of balance at least twice a week; 94% of people with MS who have trouble walking say they find it at least somewhat disruptive to their daily life, with 63% percent finding it very disruptive or disruptive.
While 70% of people with MS who have difficulty walking say that it is the most challenging aspect of their disease, 39% of people with MS and almost 50% of their caregivers say that they rarely or never discuss this with their doctor.
Loss of mobility spills over into many aspects of the lives of people with MS and their caregivers. In the surveys, 21% of people with MS who experienced mobility loss said they changed their plans to have children because of it and nearly three of five people with MS who have mobility issues said they had missed out on personal events due to these issues.
Close to 70% of people with MS who have mobility problems say it affects their emotional health; about half say their mobility issues affect their ability to work and increase their daily expenditures.
Fatigue was also a very common symptom among survey respondents; 76% of people with MS said that they experience fatigue at least twice a week. Fatigue is known to affect mobility and balance.
Speak Up, Help Is Available
The onus may fall on the person with MS or a caregiver to broach mobility loss with a doctor, LaRocca tells WebMD. "The person with MS and their partner need to be proactive in terms of raising the issues that are concerning to them," he says.
In terms of mobility issues, "there are so many different areas to pursue," he says. Several mobility aids — including canes, walkers, and electronic wheelchairs — are available to help people with MS, he says.According to the surveys, 32% of people with MS do use some type of mobility aid to get around. Of these, 37% said they are embarrassed by their use of such aids.
"The tendency to underuse mobility devices is something we really want to address in the future," LaRocca says.
The first step is to evaluate the walking problem and identify the best strategies to improve it, he says. In addition to mobility aids, other tools are available depending on the problem. Exercise braces or electrical stimulation can help foot-drop (a compensatory technique that involves raising the heel on the stronger leg to make it easier to swing the weaker leg through); time and energy management can help curb MS-related fatigue, and there are drugs that can slow the disease course as well as treat spasticity and fatigue, he says.
Exercise can also help improve mobility problems among people with MS. "Seek out advice for a physical or occupational specialist to help develop an exercise program," says Brian Hutchinson, PT, MSCS, president of the Heuga Center for Multiple Sclerosis in Edward, Colo.
"People with MS can see the same benefits of regular exercise as people without MS," he says.
Acorda is investigating a drug called Fampridine-SR, which may improve walking ability in people with MS.
SOURCES: MS Surveys by Harris Interactive, prepared for Acorda Therapeutics and the National MS Society. Nicholas LaRocca, PhD, vice president of health care delivery and policy research, National Multiple Sclerosis Society, New York City. Brian Hutchinson, PT, MSCS, president, Heuga Center for Multiple Sclerosis, Edward, Colo.
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