Aug 172004

I guess I should have been a little more clear in my disability post that without some change (i.e. going to a new drug that would lessen the lesion load) that I find disability inevitable. I’m sure next Thursday when I go to the neuro we will be analyzing where to go from here. The prospect of disability, while has always been present since my diagnosis, faded significantly after I got over the first exacerbation. Over the last 8 months it has just been exacerbation after exacerbation – sometimes not lasting very long (only a couple of weeks) and others lasting longer. These repeated exacerbations are really bringing the thought of disability to the forefront as it is seeming highly realistic – especially since after 3 months of Solu-Medrol we couldn’t get rid of the tremors. Losing control of my legs and needing a wheelchair bothered me very much at first but doesn’t bother me at all now – especially with Katja being proof that mobility aids are a very good thing if you need them and are certainly nothing to fear, despise, or resent. Plus I spend most of my life sitting or laying and my legs would not really impact my job at all. My arms and hands are what is a much larger concern because that would significantly impact my ability to do my job. With being a Windows SysAdmin I need my hands to navigate all of the GUI’s – maybe it is time to pursue the dream of being a Unix SysAdmin so I could focus on the command line with voice recognition.

My wife told me that thinking that disability is inevitable it is going to make it a self fulfilling prophecy. Maybe so. On the other hand I am a lot less optimistic of avoiding disability now. For a while I thought that maybe the big cost of having Multiple Sclerosis for me would be getting lots of injections – now I wonder if that will be the case.

 Posted by at 5:18 pm

  2 Responses to “Disability Followup”

  1. I sympathize with your wife’s concerns, but I know that it is possible to find the right side of the line between preparing for the possibility of disability and indulging in self-fulfilling prophecy. In a way, it’s like buying collision insurance – of course no one wants or expects to have a car crash, but you’d be darn sorry if you did and hadn’t prepared!

    Everyone is different when it comes to facing fear, too. Some find it best to ignore the thing we fear; others come to terms with it by engaging in obsessive research and visualization about it (who could those people be, I wonder?). One person’s obsession may be another person’s best coping mechanism. Those of us who are somewhat obsessive about research are lucky we have this communication mechanism as an alternative to dumping it all on our spouses!


  2. I probably do research things to death – probably to a neurotic level. In my wife’s defense I probably am “indulging in self-fulfilling prophecy” on ocasion. I tend to be more of a fear of the unknown type of person and knowing what to expect (or what is possible) brings a lot of peace of mind. I guess another of my many quirks.

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