More than 4,600 people with multiple sclerosis around the world took part in our survey about cognition and MS. We have now published the results.
We undertook the anonymous survey in March and April 2013 to help inform the upcoming "Cognition and MS" edition of our magazine,
MS in focus, which will be published in July 2013.
Key findings from the survey:
- 80% of respondents had experienced cognitive difficulties as part of their MS
- The majority rated the impact of cognitive difficulties on work as "very high"
- When asked about strategies they used to address cognitive problems, most relied on family and friends. A quarter said they used no strategies.
- Almost a third said that they felt that people they are close to didn't understand that cognition can be affected by MS.
Many respondents left comments about the impact of cognitive difficulties on their lives, for example:
"Your family is your best support system but even they look at you funny when you put the cereal box in the fridge."
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Feedback on the results of the survey
Thank you for conducting this survey. When I read about how many people responded and the fact that they came from all over the world was amazing. This was incredibly helpful to me, to read the comments from others, to see the graphs and especially to point out how important this aspect of MS needs to have more awareness. It is for sure an invisible symptom, that is heartbreaking for a lot of us to bear. It was only a few short years ago that problems with cognition, even surfaced. Before that, the medical community did not accept it and actually rejected it. Now, more and more I can read about how many of us with MS have legitimate complaints about the problems we face having cognitive problems. So glad to have participated in this survey to help others understand and to highlight this aspect of the disease."
Mary-Ellen Copland, Canada.