.jpg "Dr. John Kurtzke")
Back in
the 1950’s, Dr. John F Kurtzke developed the Disability Status Scale for people
with Multiple Sclerosis. Scores range from 0 = normal neurological exam to 10 =
death due to MS.
Using
the terminology of the Expanded Disability Status Scale (EDSS) revised by
Kurtzke in 1983, we can see how much “bed” essentially dominates scores …
8.0 “Essentially
restricted to bed or chair or perambulated in wheelchair…
8.5 “Essentially
restricted to bed much of day…”
9.0 “Helpless
bed patient …
9.5 “Totally
helpless bed patient …”
10.0 “Death
due to MS …”
OK that
was health care jargon circa 1983 but what about today?
The most
current distinctions I could find were in The Health and Safety Code of the State
of California amended in 2010 to address nonambulatory vs bedridden.
The
specific difference has to do with ability to reposition in bed:
“residents/clients who need assistance in transferring to and from bed (but who do not need assistance in turning or repositioning in bed), shall be considered nonambulatory … Bedridden means persons who do need assistance to turn or reposition in bed”.
Patti
cannot transfer unassisted to and from bed nor turn or reposition in bed.
Additionally challenged to effectively swallow/eat … on paper she might appear
to almost top the charts. Yet with the teamwork, technology and attention of
24/7 care facility era, Patti is far from a “helpless bed patient”.
I cannot
help but wonder how much the availability, level, and commitment to care and
support plays a role in the most advanced stages of MS?
‘Helpless’
denotes a patient’s physical abilities or lack thereof from progression of MS.
God help
us all if Kurtzke ever tried to quantify the caring choices of family and
friends of those with MS.
MS Caregiving - reframe your idea of normal
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer
I've seen those charts, but I try not to give myself a number. There are such nuances with MS, that we fit in some places, but not in others. I'm still somewhat ambulatory, but I have a problem repositioning in bed. I'm losing the use of my hands, but I still "do" a lot. I think I could take a little from column A, add that to a portion of column B, and arrive at a Chinese meal of my own MS.
ReplyDeletePeace,
Muff
Soooo many variables indeed especially with independent living with MS. Our story has progressed beyond those days and it's why I just cannot help but wonder out loud about the role of care.
DeleteI'm concerned because it is getting more difficult for me to get in and out of bed and often hard to turn because of weakness and pain. I am in bed about 95% of the time most days. I have Primary Progressive MS that is estimated to have started about age 40 but I did not get diagnosed until two years ago when things got severe and am 48 now. I have a mild bedsore on my bottom right side and my biggest problem is lack of medical insurance and have been in bankruptcy because of medical bills and about to become homeless. I don't want to take government care because I feel like others with terrible cancer need it more. Does anyone have any advice? I spend most of my time taking naps, taking meds and watching some TV type shows on hulu when I am up to it. Very hard just getting to a doctor.
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