Tuesday, January 16, 2007

Caregiving: level of disability

Multiple Sclerosis complicates labeling because physical and cognitive symptoms progress differently in each person. Yet a numerical level of disability and ability is needed and used for communication within the medical profession. 


Numbers can be difficult to wrap your mind around. 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 upper levels at 8.25.


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 at 10.


I believe it is advisable to periodically “quantify” Patti’s level of Multiple Sclerosis progression; and to ‘remind’ myself, family, friends, and readers of her dependence on others in measurable terms. 


Not everyone with MS may have this same level of disability. However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)


  1. I've read your last 2 entries and try as I may I can't come up with anything to say that doesn't seem trite.

  2. Thanks for the visuals, Patrick. They really help me understand the levels of ability Patti still has.  

  3. Thank you for sharing this. It really helps with the visuals and breaks it down for others to understand.

  4.  I moved in and took care of my father in law when he became ill until his death.  The difference was his progression was in a matter of months, not the years you have been through.  You have done an amazing job of explaining it.


  5. ,,the abilities lessen but the eyes still are so full of awareness and love!

  6. This is really a wonderful tool. Thanks for sharing Patrick. Bam


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