February 5th, 2004
Boston Cure Project
The Rocky Mountain Multiple Sclerosis Center recently surveyed people with MS about how cognitive problems affect their lives and what therapies they find to be helpful for these problems. Further below is an excerpt of the survey report, but here are some highlights:
For more information and detailed results, go to the Rocky Mountain Multiple Sclerosis Center's Complementary and Alternative Medicine (CAM) site at http://www.ms-cam.org. This site also includes a wealth of information on various CAM therapies. The Center asks for a $30 donation upon registration but free subscriptions are also available for those who need them.
Excerpt from the survey report:
Frequency and Characteristics of Reported Cognitive Problems
Among those who took the survey, nearly 73% reported that they currently experience cognitive problems. The specific cognitive functions reported to be affected most often were memory and speed of information processing. The specific cognitive functions least often thought to be affected were the ability to understand others and solve problems. About one third (31%) of those who took the survey thought that cognitive problems were their worst MS-related symptoms and two-thirds (66%) thought that their cognitive problems were among the three worst MS-related symptoms.
Three-quarters of those with cognitive problems thought that this symptom had worsened since their diagnosis. Most describe their cognitive problems as usually (14%) or always (41%) worse during exacerbations. Many (44%) have not discussed their cognitive problems with their health care provider.
Consequences of Cognitive Problems
Of those with cognitive problems, nearly half thought that their cognitive problems interfered with their ability to earn a living (46%) and with their relationships (40%). Most (76%) did not think that their cognitive problems interfered with their ability to drive. Unfortunately, however, of those who thought that cognitive problems interfered with their driving, very few (8%) had ever had a driving evaluation and nearly half (46%) were still driving without limitations.
Half of those who participated in this survey were unemployed. Of those who were unemployed, 75% indicated that they did not work because of disability. Nearly all of this group (96%) attributed their disability to symptoms related to MS. The three MS symptoms most often cited as being the "primary reason" for disability include, in order: fatigue (63%), cognitive problems (33%), and walking problems (32%).
Perceived Causes of Cognitive Problems
Cognitive problems may occur for a number of different reasons. In order of frequency, the following conditions were thought to contribute to cognitive problems:
Multiple sclerosis 94%Conclusions:
Sleep problems 55%
Medication side effects 32%
Cognitive problems may commonly occur among people with MS. The number reporting cognitive problems in this survey (73%) is higher than the approximately 50% that has been reported in published literature on the basis of cognitive testing. It may be that some who experience cognitive problems would be reassured by cognitive testing that their function is actually within a normal range.
A number of interventions were reported to be helpful for cognitive problems, including both conventional and unconventional therapies. Among medications, people who participated in the survey reported benefits from Aricept, Provigil, and Cylert. These are all currently being studied to determine through formal clinical trials whether they improve cognitive function among people with MS.
The high number of people reporting benefits from music therapy is interesting but difficult to interpret. Based on the way the question was asked it is not clear whether people were noting benefits with formal music therapy or from casual listening. We hope that this can be clarified by those who responded through the use of our forum. If you reported cognitive benefits from music therapy, please go to the forum at www.ms-cam.org (or click here) and share your experiences with the group to help clarify this issue.
Many of those who took the survey found some benefit with cooling strategies. Those who responded to the survey perceived benefits from using both cooling garments and from such simple techniques as taking cool showers or using personal fans. This is consistent with a recently reported formal clinical trial of an active cooling garment.
Benefits were also reported with yoga, caffeine, tai chi, aerobic exercise and cognitive rehabilitation therapy with neuropsychologists, speech therapists, and occupational therapists.
It is important to remember that while your own experiences of cognition
are critical, self-assessment of brain function may not be correct. Professional
assessment can be very helpful. Talk with your health care provider about
your cognitive problems. There can be a number of causes for cognitive
problems and some of these may be treatable. And importantly, if you think
your driving has been affected, perhaps a formal driving evaluation might
be helpful. Many people who get formal driving evaluations are relieved
to learn that they may continue to drive safely.
Copyright © 2004, Boston Cure Project