Saturday, May 30, 2015

Day 97 - What Makes for a "Good" Day (+88)

I have had more bad days than good days since my treatment four months ago.  But what makes for a "bad" day versus a "good" day?  The following is an interesting way of categorizing MS disability and provides the basis for expressing how I feel on a given day:

Expanded Disability Status Scale (EDSS)

Score Description
1.0 No disability, minimal signs in one Functional System (FS) where the FS's are Pyramidal (motor function) (P), Cerebellar (C11), Brainstem (BS), Sensory (S),Bowel and Bladder (BB), Visual (V), Cerebral or Mental (Cb), Other (O)
1.5 No disability, minimal signs in more than one FS
2.0 Minimal disability in one FS
2.5 Mild disability in one FS or minimal disability in two FS
3.0 Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5 Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0 Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5 Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0 Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5 Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0 Requires a walking aid - cane, crutch, etc - to walk about 100m with or without resting
6.5 Requires two walking aids - pair of canes, crutches, etc - to walk about 20m without resting
7.0 Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5 Unable to take more than a few steps. Restricted to wheelchair and may need aid in transferring. Can wheel self but can not carry on in standard wheelchair for a full day and may require a motorized wheelchair
8.0 Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5 Essentially restricted to bed much of day. Has some effective use of arms retains some self care functions
9.0 Confined to bed. Can still communicate and eat
9.5 Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0 Death due to MS

When I entered the hospital for my treatment I was a solid 6.0 but with an occasional regression to 6.5 though this was rare and usually only for brief periods.   On leaving the hospital I have been a solid 6.5 with only occasional improvements to 6.0 and these usually only for brief periods before the fatigue pushes me back to 6.5.

The worrisome thing is the trending which has seemingly continued since I left the hospital.  In the first couple months after leaving I did feel like I was improving...more time at 6.0 before dropping back to 6.5.   Lately it seems like the time at 6.0 has been going backwards.   For the past two days this has actually reversed and I have felt like 6.0 for more of the day than I can remember.  I wish I could explain why.

So.   When I say that I am having a good day it would be a majority of the day at a 6 and a bad day is the majority at 6.5.  Lately the days have been largely pretty bad (as in 6.5) with the thankfully rare occurrences of as bad as 6.8 or so.  Today and yesterday would be rated better but only to the extent of given them a 6.3-6.4.

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