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)
the end comment so true :) have a good week
ReplyDeleteDeb
I think that is a true statement... we will need a caregiver or we will be a caregiver one day. I know a retired couple, who when they finally built their own home, had that understanding that one day they may need wheelchairs in their own, or one of them may need to be taken away to the hospital, or even need a hospital bed in their home. They designed their home with extra wide hallways and doorways, and wide stairways in the event they'll need a wheelchair lift. The home is beautiful and practical for someone who may need the extra room. I don't know of too many people who think that way. I say it's good to be prepared. Thanks for reminding us! Bea
ReplyDeletethat is so true (your last statement). I can see why they need the objective scales to see how a disability is progressing; but it must be so hard to see the decline in the one you love.
ReplyDeletebetty