I have been participating in this research survey for over a decade and I’m not sure you read the comments but I’ve said this in the past and I’ll say it again:
The phrasing of disability questions does not allow for the fact that many, if not most, people with advanced MS use some kind of ADL or assistive technology to complete tasks. Asking if fatigue, hand function, bowel-bladder issues etc. prevents us from doing some/none/all of our tasks is not a fair question. I’m able to do 90% of the things I want to do in a day but I can’t do them without some sort of assistive device. So how do I answer this question accurately? My hand function does not prevent me from doing most of my tasks because I have ADLs, I take medications, I have assistive technology. To wit, I have very limited hand function but I had no trouble writing this because I use assistive technology.
Thank you for your continued dedication to NARCOMS! We read all of the comments submitted with the surveys, and your comments are really important for several reasons. First, they help us make the survey better. Second, they help us think of new research questions and topics of interest to you. Third, they help us choose topics for the magazine. So please, keep telling us what you think and keep sending in suggestions!
The disability questions are focused on your level of ability without assistance. This helps to determine the current status of disability. Knowing this over time helps researchers learn about when disability occurs in the course of MS. It is important that you continue to answer these questions without considering the use of assistive devices.
How you function in your daily life with assistance is also important. However, use of devices is a slightly different area of research than disability level. For example, the “MS Apps” section in this issue lists assistive technologies for those with visual difficulties (page 18). Some people use page-turners for reading, or voice technologies for writing, or devices to help their mobility.
Previous surveys have asked about the need for assistance with daily activities, most recently in the Spring 2016 Update. In the Fall 2013 Update we asked the types of assistive devices used. Asking this level of detail in each survey would make the survey very long but we are considering a shorter question about whether you use devices to be included in regular updates. Thank you so much for the suggestion!
As always, if you have any questions about other projects
or research that sounds interesting, please let us know!