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.

Thursday, May 28, 2015

Day 95 - Followup Appointment - Four Months Since Treatment (+86)

Had a follow-up appointment today at Charing Cross.   Time flies as it has been four months since my hospital stay.

I had talked to Johnny on the phone some weeks ago to confirm that my blood and urine tests were looking good.  At that point I expressed my concern that I was really not feeling good, fatigued and worse, continued progress of MS symptoms.   At that point Johnny assured me that all the test results look ok and that recovery, and the time to see an impact from the treatment, can range from two to six months.

Same message today.   Next month I have a series of MRIs and a follow-up with the neuro.  Maybe by then I will be feeling better.   Dunno.   In any case we will see.

Saturday, May 16, 2015

Day 83 - MS and Manual Dexterity (+74)

Having retired from being an IT leader, with no hands on technical skills other than PowerPoint and Excel, I have been retooling myself as an inventor/maker.   I have always been interested in electronics and in the interface between the real world and the computer.   So this is what I have been doing with myself.

I had not really thought about this, and I am not sure it would have made a difference in any case, but my choice of past time may not have been the best one for someone with advancing MS.   Working with small electronic circuits requires manual dexterity!   I have never been the most coordinated of people in the first place but add MS starting to rob me of manual dexterity and you can have some frustrating moments! 

Tuesday, May 12, 2015

Day 79 - Jury is Still Out... (+70)

...deliberating as to whether the nine days in the hospital was worth it.   I have not posted for a while as there has been little to say other than what would sound like whining.   I continue to battle fatigue, and what's worse, further degradation of motor function. 

Before going in for the treatment I was walking inside the house with a cane and only occasionally with crutches.  Over the past weeks I have been trying to use just one crutch but have struggled to do so most of the time.  I have also had some loss of sensation and control in my hands and arms which is truly worrisome.  This comes and goes but I would prefer it to not be around at all.

What is interesting is that I felt like I was recovering until about six weeks ago (time of my second physio visit).  I had been primarily moving around on one crutch and was feeling positive.   It has gone either downhill or sideways since that point in time.

There are three possible reasons for how I am feeling.  The first being that my body is fighting an infection.   The second reason would be that I am still recovering from the treatment.  The third, and obviously worst case, is that the treatment had virtually no positive impact, and may in fact, have added a setback.

The first reason is unlikely as I really have no other symptoms of an infection and sure enough my monthly blood and urine test was normal but for the lower white cell count (which is to be expected). 

The second reason is possible given that the recovery period for the treatment can be as long as six months.   I get the feeling that this is somewhat unusual but still possible.  It all depends on how ones body deals with the damage caused by the drug.   Given that I spent nine days, instead of five, in the hospital I can only hope that my body is just being cantankerous.

Obviously, I am not a fan of the third possible reason as I am not sure what would be next.  There are not a lot of alternatives for people suffering from MS at the point where I am in the disease progression.