Christmas Holidays - Decisions and Kicking into Action

The thing about having PPMS [Primary Progressive Multiple Sclerosis] is that the condition is incredibly variable. 15% of MS sufferers have it, whilst 85% of sufferers have the more manageable condition Relapsing Remitting Multiple Sclerosis. This means that you just can't predict how quickly you will deteriorate and what symptoms you will accumulate. This can be incredibly frustrating and means that predicting the future is something of a minefield.

As a result, and certainly in my opinion, the only thing you can do is go hell for leather and do the very best and most you can in order to stop yourself from progressing into further debilitating disability.

My EDSS score was, according to my own analysis, about 3.5. How quickly this would deteriorate into a worse level was a complete unknown.

[Source]

As such, I really felt that I had to take the very best course of action order to try and halt the progression of my multiple sclerosis. The only answer this was HSCT. Drugs were not an option simply because I wasn't offered any.

The MS Trust sets it out as follows:

1.0No disability, minimal signs in one FS
1.5No disability, minimal signs in more than one FS
2.0Minimal disability in one FS
2.5Mild disability in one FS or minimal disability in two FS
3.0Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5Significant 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
5.0Disability 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
5.5Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0Requires a walking aid – cane, crutch, etc. – to walk about 100m with or without resting
6.5Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting
7.0Unable 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
7.5Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but cannot carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0Essentially 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
8.5Essentially restricted to bed much of day. Has some effective use of arms retains some self-care functions
9.0Confined to bed. Can still communicate and eat
9.5Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0Death due to MS

You either sit back and let people you MS happen to you all you rally forward and do everything you can to combat it.