Thursday, August 16, 2007

Caregiving: level of disability & ability

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

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  1. I heard of but couldn't find the KEDSS so once again I'm indebted to you.  My awareness of Ricky's MS and what he truly needs which I CAN'T see has expanded from just using your Journal and its links.  I hope you can make the 4th Anniversary JLand Chat this Sunday?  Click into my place for details.  CATHY

  2. And again, I find I continue to be a visual learner.... <grin>

  3. thank you so much for sharing this:) have a good weekend


  4. What an informative, richly painted description of your care for Patti.
    May you always be able to 'paint' these sobering yet informative footsteps of your life with Patti in colour.
    God Bless

  5. I was told "chronic MS" for 4yrs and then ALS.  I came across this as strictly an FYI


  6. Imagine how gray each of your worlds would be without the other? Your dedication to your wife is uplifting and compassionate. If spouses could treat each other with such devoting without the illness factors the world would have more happy marriages wouldn't it.  I hope us your J-land friends can bring a little more color into your world with our freindships. Thanks for this you gave us a very poignant review of terms used for MS as well helped us understand with the charts. I had to deal with a Neurologist when I first became deaf due to the inbalance issues. I can well appreciate your terminology for them. In the end mine never did have a prognosis he could nail it to (winks). (Hugs) Indigo

  7. well put, since I care for both parent and spouse the descriptions are so apt.  Thanks for that jewel of insite!  

  8. hee hee...yes i can spell..insight!

  9. The constants of MS are the changes and adaptations required to keep life steady.  It becomes so difficult to keep the colors of the years sharing as bright as they were.  The years of caring can be painted brightly with the sharing still there.  This is what you have painted for your readers.  Keep those colors flowing.                  
                              Blessings,  Leigh



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