Noc Spisovatel Opět Jezdí!

The good news:  Night Writer has pretty much retired “No Longer I Who Live“, the essential blog he wrote about life and faith while living with ALS while he, seemingly, had it.  Which he apparently no longer does.  The ALS, I mean.  The life and faith go on – which is better than good news – but let’s not go on a tangent here.

The great news:  He’s dusted off “Night Writer”, at least for a bit, to chronicle his family’s trip to Prague to get “Tiger Lily”, the junior writer of the clan, started on her new career introducing vowels to the Czech Republic.

Stop by and wish them šťastné cesty!

3 thoughts on “Noc Spisovatel Opět Jezdí!

  1. I was unaware that ALS was a curable (or “remissable”) disease. I don’t believe I’ve ever met NW in person at the MOB meetups, but cheers to NW for kicking a health issue’s ass. Glad to hear it. (If that’s what happened)

  2. Thanks, Bill C – you’re right, it’s not considered a “curable” or “remissable” disease. It is also a disease that is diagnosed by omission; that is, you can’t detect it by a blood, fluid or tissue test – you do it by observation and elimination of what it can’t be. The Mayo (and not the folks that created Mn Sure) looked at the nerve damage I had (via EMG), the loss of muscle control and tone in my lower legs and upper body, and were able to rule out MS, Parkinson’s and others, and it was all in line with an ALS diagnosis. The Mayo has been diagnosing ALS for a long time (they were the ones who diagnosed Lou Gehrig, in fact) and they were in the 95-98% certainty level with the initial diagnosis. Some 13 months after that diagnosis, however, they feel it is “increasingly unlikely” that I have ALS because my condition has not deteriorated and is actually showing signs of improving.

    So, there’s the statistically small chance that the Mayo misdiagnosed me, or we experienced a miracle. Based on some of the other things we’ve seen, we know which answer we (my family and I) came up with. All the details of that story are in the No Longer I Who Live blog Mitch linked above. If you just want to follow our adventures in the Czech Republic and other places, feel free to follow The Night Writer blog!

  3. Thanks, Mitch! It will be interesting to see how much it costs to buy a vowel over there. On one hand, vowels are apparently scarce, so it could be expensive. OTOH, nobody seems to want them, so maybe they’re a bargain!

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