Sunday, September 06, 2015

Update

I can only say things are GOOD- not "perfect", whatever that means.

In the morning I often feel "normal", i.e., how I feel I remember from 6 - plus years ago; I often hit a wall by 5 PM. It is not bad, and getting better as we learn how to adjust my machine...

I must learn, as Sarah says: it is a PROCESS,  perhaps un- ending...

Here is a more objective Libby report:

"Steve had the second part of his surgery in which they run the lead wires under the skin and attach them to the “battery”, which is somewhat like a heart pacemaker. Then the next week we went back and Sarah, our wonderful neurologist, turned the contraption on and did the initial programming. They put an electrode in each side of his brain; each one has 8 locations which can be individually turned on and off, and have different amounts of charge delivered. My mathematically challenged brain can’t conceive of how many different combinatioin possibilities this presents — needless to say, it will take some time to work out the best combination to achieve optimum effectiveness.

"At this point, Steve’s dyskinesia is absent, which is wonderful. He is still having troubles with small motor coordination, leg cramps, a very soft voice (this started right after the first surgery) and sometimes his walking. Every day presents something different … sometimes he feels pretty normal, and then a few hours later he hits some mysterious wall and feels awful for several hours. Luckily Sarah is very responsive and can communicate well… when we send her an email she usually gets back within four hours; and remarkably, when we describe what is happening, she knows how to guide us through changing the settings so we don’t have to make a trip to Albuquerque. With our marginal cars that can be a problem in itself. We go back for another office visit at the end of September — we’re keeping a log of what is happening every day to try to discover if there is some pattern to all the ups and downs. "


Actually, better than that- this was written before my last "tweak".  I am now over 80%, and getting better...

12 comments:

Jess said...

Cyborg Steve. Glad to hear things are going well.

Anonymous said...

Make progress slowly - all is progress!

Great news

JohnnyUK

Mark Farrell-Churchill said...

Chuffed to hear it's going well! Best from Jess and me.

Chas Clifton said...

Very heartening, Steve.

Matthew Mullenix said...

Moving in the right direction!

Guy Boyd said...

Steve and Libby, very encouraging. I admire your strength and determination.

Reid Farmer said...

Good news!!!!!!!!!!

Anonymous said...

Good to hear

Jim Cornelius
www.frontierpartisans.com

Gary Moody said...

Steve, this report is extremely encouraging. You'll be ready to help me trap that new bird sooner than you think !!!!!

Gary Worth Moody

Nathaniel Fitch said...

Excellent news, Steve!

Anonymous said...

So glad to hear things are moving so quickly...just remember where you were last April...can't wait to see you at 95%! Love you.
Sis K

lizequinox said...

Keep on keepin' on. Thank you Libby for being there! xo