If you woke up one morning and had difficulty walking, you’d likely schedule an appointment with your doctor as soon as possible. But even though two-thirds of people with Multiple Sclerosis (MS) say mobility loss is a big problem, almost 40% report they don’t talk to their doctor about problems with mobility. That’s according to results of a new Harris Interactive survey just released by the National Multiple Sclerosis Society and Acorda Therapeutics. The survey involved more than 1,000 people living with MS and uncovered new information that even surprised experts in the MS field.
MS is a chronic, disabling disease that attacks the central nervous system and can cause difficulty with walking and coordination, fatigue, numbness, weakness, and visual problems. Far from rare, there are 400,000 people in the U.S. and nearly 2.5 million worldwide living with MS.
“Many people with MS say they are not talking about mobility loss with their doctor,” says Dr. Nicholas LaRocca, VP of healthcare delivery and policy research at the National MS Society. “It’s a big problem when people don’t communicate clearly about mobility, since difficulty walking can affect so many different aspects of someone’s life.”
The survey found that mobility challenges have a big impact on the quality of life among many people with MS, limiting their day-to-day activities and independence. A majority of people with MS said mobility problems have some or a great deal of impact on the ability to carry out daily tasks like going to the bank (70%), self esteem (69%) and the ability to travel (66%). In addition, 58% of people with MS-related mobility problems have missed significant life events—22% missed weddings, 26% canceled vacation plans.
“As someone who has lived with MS for over two decades, I see people with MS are living fuller and more active lives, but we have a long way to go,” says Mimi Mosher, a patient advocate. “This survey shed new light on the challenges that thousands of us with MS are experiencing every day.”
The survey showed a majority of people living with MS think the use of mobility devices, such as wheelchairs and scooters, are “worth it” to help them retain their independence. But 40% of the survey respondents who use a device reported they’re embarrassed to use devices, or don’t use them as often as they should. By not using the devices, many people with MS could be putting themselves at risk for falls and injuries.
The survey also confirms that fatigue, or feeling worn out and lacking energy, is a very common symptom of MS, occurring at least twice a week in more than three out of four people with MS surveyed. Among people with MS, fatigue can significantly interfere with the ability to function at home and at work. Of those who do experience fatigue, 95% report that fatigue is at least somewhat disruptive in their daily lives.
“Many people do not realize the dramatic effect fatigue can have on a person’s ability to get through the day, and how it can make other symptoms, such as mobility, even worse,” says Dr. LaRocca.
The survey also provided new insights about how people with MS can maintain their mobility. For instance, exercise has been shown to be beneficial. According to the surveys, about 74% of people with MS participate in physical activities or exercise, and 85% say exercise has had at least a little or a great deal of positive impact on their quality of life.
Dr. Patricia O’Looney is vice president of biomedical research for the National MS Society. For more information about this survey and MS, visit www.nationalMSsociety.org.