Since Patti’s original diagnosis of Multiple Sclerosis 22 years ago Patti has been labeled at varying times as "chronic progressive", “relapsing-remitting”, “secondary progressive”, “progressive relapsing”, and even the enigmatic “borderline form of multiple sclerosis”. Neurologists and TV weather forecasters seem to share the same gift for accuracy. <grin>
Pictured below are more visually oriented graphs of Patti's MS progression and resulting disappearing abilities.
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 disability scores in the higher levels.
Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s 'abilities' score in the lowest percentiles.
Numbers can identify yet the resulting picture of caring can never be painted as clearly.
A parent caring for a child paints with more shades of dreams. An ‘adult child’ caring for a parent paints with more hues of memories. A long term spousal caregiver paints a canvas where the years spent caring dwarf the years spent sharing.
Dark brushes haunt everyone. Reaching for color takes work.
Caregivingly Yours, Patrick Leer
Tags: Caregiving, Multiple Sclerosis, MS, Kurtzke Expanded Disability Status Scale, Modified Barthel Index of ADL, EDSS, ADL