A numerical level of disability is necessary for communication within the medical profession. Multiple Sclerosis complicates labeling because physical and cognitive symptoms may progress differently in each person.
Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s score is 8.25.
Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are evaluated on the Barthel Index of ADL on a scale from 0 to 20, with 20 being “independent”. Patti’s score is 2.
Periodically I feel it is appropriate to numerically identify the level of Patti’s MS progression and to numerically identify her dependence on others for 90% of the activities of daily living.
Not everyone with MS may have the same level of disability nor may ever progress to the same “numbers”.However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)