Rosalind Kalb of the National MS Society stated at the Consortium of MS Centers conference in June 2016 that there is no clear definition of what constitutes advanced MS. The term is used quite broadly. It may be used to describe the person with MS who is dependent upon others for assistance with personal care and daily activities, who is rarely able to leave the home, and who cannot be left alone for extended periods of time. However, the term advanced MS may also refer to a person who has more progressive disability, symptoms that interfere with activities of daily living, or safety issues that require adaptations to maintain independence and mobility.
Advanced MS does not mean 'home-bound'
My dear friend, Karen, is a person living with primary progressive MS for over 20 years who arguably has “advanced MS” but who is fiercely independent and able to stay engaged in the community with the help of specialty equipment and accommodations. She uses a rather large 350-pound electric chair, drives her own van with hand controls, and until recently was employed full time in a medical office.
Karen traveled to Chicago this summer and I accompanied her as a caregiver to be available to help manage luggage and extra equipment, make sure that she could get in and out of bed safely, and to give her the peace of mind that if anything went awry she would not have to face it alone. I’m sure that I helped Karen tremendously but one thing I learned from watching her interact with others on this trip was that a smile, patience, and clear communication had the power to overcome many hurdles that arose along the way.
Read this post in its entirety:
What Is Advanced MS?
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