Mike’s Ataxia Blog

Day 27 11/11/08

     Not a good night.  I know the beds have to have wheels, but when you grab at one to keep your balance…you don’t.  I fell on the floor, scared the hell out of the nurse.  She came in and actually tried to pick me up from a sitting position.  Not going to happen.  I told her to save herself the hernia and got to my knees, which made it a lot easier.  Then we put the bed back in its place and I promised to be a good boy.

     I lied.  Couple of hours later, I’m getting back in bed, and I did the “Curly Shuffle” backwards about 15 feet across the room.  Fortunately, the water cooler broke my fall.  It never stood a chance.  The same nurse comes flying in, and I’m lying on the floor in my shorts next to the broken remains of the cooler.  Now this girl doesn’t speak much English, but I knew from her eyes that she was thinking “how in hell did he wind up over there and why did it have to happen on my shift?”.  Luckily, no blood (or water) was spilt.

     So now I’m the proud owner of a new cooler, and I do mean owner.  But for $25 total, they had that sucker installed by 2 PM.  Try that in NY.  You can’t get an ambulance that fast.  I also got a new bed, the old one never did work right, needs a brake job.

     The renewed balance problem seems to have coincided with the 3 spinals in a row, and the doctors now want to make the final treatment an IV.  I understand their reasoning, but there may be another culprit.  Before a spinal, they pump you full of Valium. My friend Jim’s sister-in-law is an RN, and she told him that even after the initial drowsiness wears off, the muscle relaxant effect lingers on.  Wouldn’t affect speech, energy, or dizziness.  And it didn’t.  But last night and this morning, my balance was shot.  Now, it’s 10 PM here, and I’m feeling much better. This morning, I went for PT and Jason took one look at me and said, ” go home, sleep”.

     I’m looking foward to making up for lost time tomorrow.

6 comments November 11th, 2008

Day 26 11/10/08

     Little late on this one.  Spinal today, had to stay in bed until 8:30.  That’s worse than the spinal itself.  That makes 6 out of 7, 3 spinals and 3 IVs.  My schedule was switched around, so Thursday is my last day off.  For the first time, I’m hiring someone to go with me, as I’m shopping for most of the gifts for the staff and my family.

     When I think back to how people wanted me to hire somebody for the whole month, I have to laugh.  I don’t think I would have lasted a month in one room with my wife, much less a stranger who doesn’t speak English.  My wife says my vacation is over soon, and back to reality.  I’d make that trade any day, but it is good to know that I still like myself enough to be alone for a month.  Although it’s much easier now than 20 years ago when I was touring bus and truck singing in Europe.  Then, a weekly 15 minute phone call was an expensive luxury, compared to daily video calls now.  Still, it was a lot more fun then. I was doing what I loved to do, and I didn’t have a wife and four little ones tugging at my heart strings.  Now, I miss them like crazy and I’m getting IVs and needles in my spine.

     It’s a good thing that I spent time in various training rooms when I was younger. Needles are no stranger, nor electrowave therapy, and all of the other fun things they think up to pass the time.  How difficult it must be for the children, not knowing why strangers are hurting them, and for the parents, who must watch someone doing these necessary, but unpleasant things to their children (their children!).  I know I keep coming back to this, but it has made quite an impression on me.  I have led a sheltered and very lucky life; until I came here, I had never met a child with Cerebral Palsy, or ONH, or anoxia, much less come to care for them, and their parents.  Of all the things I have seen and done here, I’ll remember that the most.

1 comment November 11th, 2008