The decision at hand is whether to participate in a new ALS drug research study called NP001.  I suppose that most people at first glance would wonder why this is a hard decision.   Here are my thoughts:

If this were a possible wonder drug that might cure me, of course I would take it.  But it is not.  It is a 1 to 1 placebo ratio drug trial that has some data showing that it slows the progression in some people.  I only have a 50% chance of even getting the drug.  Therefore, the upside might be significant but very well might be nothing at all.  It is certainly not a cure.

It seems like people facing possible death by cancer, etc. are often in fear of that possibility and wanting to take desperate measures to save themselves.  Understandable, though I have never been in that position.

I am not saying that I don’t have fear, I most definitely do, from time to time, but there does seem to be some advantage to accepting the outcome for the certainty that it is.   This acceptance allows one to skip the desperate scrambling of saving one’s self and focus more on living out life with as much joy, interest and social connections as possible.  In my favorite movie, “The Shawshank Redemption”, Morgan Freeman tells fellow inmate, Andy Dupree “Hope is a dangerous thing.  Hope will drive you mad”.  Now the end of the movie shows that hope might actually be a good thing, but I totally see the point that Morgan Freeman was making.

The NP001 drug study would require me to do day long intravenous infusions in the hospital 3 to 5 days in a row every 25 days for 6 months.  Some side effects occur but usually not too severe.

Though getting very weak in some limb muscles, so far, I feel very good.  I do not live my life like a sick person.  With my E-bike, etc. I don’t feel like a sick person.  I am doing a pretty good job of pretending.  It is going to get very difficult to pretend while going to the hospital for day long intravenous infusions.  Perhaps pretending is not a good thing.  Perhaps hope is a good thing.  Again, though, this drug is not a cure.

  • I have decided to participate in the study.  Right now there is a 50% chance that I qualify.  The results will be back in a couple of days.  4/27/2017
  • 4/29/2017: It looks like I do not qualify for the study.  My inflammation markers are too low, basically near normal levels.  I actually am relieved.  Just the trip to the hospital for blood draws and tests made me depressed.