Polls Gauge MS Impact on Quality of Life
Two new complementary surveys conducted by Harris Interactive on behalf of Acorda Therapeutics, Inc. and the National MS Society show that a large percentage of people with multiple sclerosis (MS) report difficulty walking, loss of mobility, and fatigue as having disrupted many aspects of their quality of life, including family relationships, independence, work, and financial security.
Among those with MS who participated in the studies, almost two-thirds (64%) experience trouble walking and the inability to walk or balance at least twice per week. And nearly all of those who have reported these experiences (94%) find it at least “somewhat disruptive” to their overall daily life, followed by 63% who find it “very disruptive” or “disruptive.” A total of 70% of people with MS who report having difficulty walking, also report it to be the most challenging aspect of their MS.
The data also suggest that fatigue is a very common symptom of MS, with 76% indicating that they experience fatigue twice per week. Of those, 95% report that it is at least “somewhat disruptive” in their daily lives and 60% report that it is either “disruptive” or “very disruptive.”
Despite these findings, which were gathered from interviews conducted among representative samples of 1,011 people living with MS and 317 care partners, 39% of the people with MS and 49% of the care partners surveyed report that they rarely or never discuss mobility issues with a physician.
“Among the many important conclusions we can draw from these studies is that they indicate we must educate more people with MS and care partners about the impact of mobility loss and the options now available to address mobility challenges,” said Dr. Nicholas LaRocca, vice president, health care delivery and policy research, National MS Society. “Many people do not realize the extent to which symptoms such as fatigue can affect people living with MS. Physical fatigue is a very common symptom of MS that can also affect mobility and balance. This study clearly demonstrates that it is essential to assess the impact of multiple symptoms in MS in order to develop effective educational programs and treatment strategies.”
Some of the other findings include:
—A majority of people living with MS think that walking problems due to MS have some or a great deal of negative impact on:
- • the ability to carry out daily tasks, such as shopping or going to the bank (70%)• self-esteem (69%)• the ability to travel (66%)
—58% of people with MS who have difficulty walking say it caused them to miss common, significant life events, including 22% who missed a wedding and 26% who cancelled vacation plans.
—Of people with MS who have difficulty walking:
- • 74% report that family members had to take on more household responsibilities because of diffi culty walking• 68% find that getting around can be dangerous due to difficulty walking• 47% find that difficulty walking has increased the cost of their care.
—In addition to exploring the impact of diverse MS symptoms on the lives of people with MS and on care partners, the surveys also examined the tools that people with MS are using to deal with difficulty walking:
- • 86% of the people with MS who use a mobility device report they do so to maintain their independence and 54% because of frequent falls• 92% of people with MS who use a mobility device report that using a mobility device is “worth it,” though 45% of people with MS report that they are or would be embarrassed about using a mobility device• 36% of people with MS who use a mobility device report that they do not use a mobility device as much as they should.
—Mobility challenges are also found to have a profound impact on the careers and fi nancial health of many people with MS and care partners:
- • Among people with MS who are employed and who experience difficulty walking, 44% have had to take days off from work and 34% have had to work reduced hours because of difficulty walking.• Fully 50% of people with MS who experience difficulty walking report that their living expenses have increased either a little (32%) or a lot (18%) as a result of mobility issues.• Among care partners who are employed, 46% report their work has been negatively impacted, including 32% who have had to take days off as a result of their care giving responsibilities.
‘Wiihabilitation’—Interactive Games Offer New Outlet for Patients with SCI
Nintendo’s Wii, the fifth video game console released by the company in its illustrious 33-year history in the gaming industry, is becoming a popular choice among health care professionals as an alternative to standard spinal cord injury rehabilitation techniques. There are features that separates the Wii from other “next generation” consoles such as the Playstation 3 and Xbox 360 and also make it a practical choice for rehabilitating patients with SCI and other disabilities. The Wii uses wireless remotes that function as handheld pointing devices that can detect acceleration in three dimensions. This allows users to control the game using physical gestures as well as traditional button presses. There are numerous interactive games that have been developed for the Wii that require body movements that are very similar to traditional therapy exercises. The most popular among patients are the sports-oriented titles such as Wii Sports which includes tennis, baseball, bowling, boxing, and golf.
The Hines Veterans Affair Hospitals west of Chicago recently purchased a Wii console for their spinal cord injury unit. Pfc. Matthew Turpen, 22, paralyzed from the chest down, told the Associated Press that he plays Wii golf and bowling from his wheelchair at Hines and says the games help beat the monotony of rehab and seem to be doing his body good, too. “A lot of guys don’t have full finger function so it definitely helps being able to work on using your fingers more and figuring out different ways to use your hands” and arms, Turpen said.
The Walter Reed Army Medical Center is also seeing a rise in popularity of the device, due in part to the age bracket of many soldiers injured in Iraq, which tends to be between 19 and 25—prime ages for those interested in video games. But the gaming system is being used by all age groups, from youths to seniors, for a variety of ailments and disabilities.
Some of the benefits of playing the Wii in a rehabilitative setting are improvements in daily-living skills, strength, balance and coordination, and cognitive function. Most importantly, it takes a great deal of the boredom out of rehabilitation, motivating many to continue to work toward getting better.
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