I shipped up to Boston… pt 1

This week was the last infusion in the Brainstorm trial for the NurOwn drug.  Now, three more visits left, and I will share my thoughts.

So, to be fair and balanced, I don’t know if it’s working.  It might be slowing down the ALS, it definitely is not reversing it though.  What does that mean?  It means that I can still putter around the house like a very old man, but stairs are very difficult without a handrail on my right side.  For those who don’t know, my left arm is where the weakness started, and my speech.

So the trial did nothing for my arms and speech, again, unless they slowed down the progression.  Dr Maragakis had told me that my own progression was comparatively slow already, but that just means not one year but maybe three to five years.  That is ok, God blessed me with this weird hybrid bulbar spinal onset.  I don’t know of others who have the same type.

Anyway, the trip!  It was cold in Massachusetts.  No, like really cold!  But we had a United flight out of Dulles, got us to Logan airport on time, and we had a minivan waiting.

An aside here.  United Airlines at Dulles has done more for us than any other airline or airport.  They moved us to better seats without asking, twice, and let us board first without having us get run over by the priority boarding.  Jetblue is a close second, but that is only because they have WiFi on the plane.  Dulles has been a dream airport for me, even if it is huge.  Reagan National?  Sucks, and the traffic is terrible and the people are rude.  American Airlines?  They don’t even let elderly and disabled board early, and they are constantly pimping their credit cards and flyer programs. If I don’t have to fly them, I won’t!  Logan airport…  Ok, it’s more convenient to get to from Worcester, but it’s filled with A-holes.  I said it, I’m not even sorry.

We had a sweet dodge caravan with a traction control option for when we really needed to make good time, and I should have rented one for every trip because Mel likes driving minivans, and even though she doesn’t want to buy a Dodge, she was comfortable driving it, much more so than the Malibu or the other SUV we had.  Lesson learned, too late!

We got there, and went back a little before noon, they wanted to start early this time.  And I had Karen, and Lisa, and Jackie as my OR nurses just like the other times, which was nice!  The anaethsetist doctor was different, but he had worked with the ladies for twenty years or more, and it was hilarious to hear them play off each other!  They seemed to have a real camaraderie, which is something you can tell if they are playfully making fun of each other!  The doc also insert my IV.  Nurses who read this, how many doctors do you know who can insert a butterfly IV into a hand vein, first try, with little pain?  Be honest.  This is the first time I ever saw a doctor do it!  Of course Karen then had to add extensions to it, because, and again a fun atmosphere.

The procedure itself though, I was nervous.  It hurt a bit even with the lidocaine, but less than the first time.  I was also able to tell them BEFORE I passed out this time, so my blood pressure only dropped to sixty before they caught me and distracted me and maybe gave me something to keep the rate up.  Yaaaay…

I think that is what made it worse this time?  The stuff they gave me, plus being stuck on the bed for however many hours, plus not eating, plus a bloody spinal tap, it was a little rough this time.  And it was cold, and the tv didn’t have anything on and I was in room fifteen not sixteen, GOSH!  Well, I could complain, I’m a wimp.  I will say that Mel brought me some very good fish and chips, and we had some very good talks which I shall address in part two.  Suffice to say though, when they were giving me the option to stay another day or be discharged, I asked to be discharged!

And we drove back, beat the snow, and even left with only two minutes of delay!  Twilight zone!  It really was, when we were landing at Dulles we hit MAD turbulence, and couldn’t see anything till about two minutes before touchdown.  I was saying Hail Marys, not gonna lie!

And we made it home courtesy of Joey, and relieved Mom, who had been watching the kids (Thank you!), and then went to bed, in a bit of pain.

Today, as I write this, I am feeling under the weather, which could have been from the travel and cold, for sure.  But part two is coming, a more serious and in-depth look at the trip.