DBS part 6


I went to see the doctor today for some additional programming, trying to find the best combination of variables for my particular situation.   If it seems like a slow process, that's because it is slow.  But there are reasons for that, and they are good reasons.

First, the brain is powerful, and even a little mysterious.  Sure, the science has come a long way, and we  have accumulated vast knowledge about the brain.  But there is still much that we  do not know.  In the case of DBS surgery, there is a precise place to insert the leads, but then what?  There is no manual where you can look up the precise settings that are needed.

Second, every patient is unique. What works for my friend, for example, may not be at all right for me.  Again, there is no manual.

Third, I am blessed to be the first person (in this part of the country, anyway) to get the latest and greatest hardware from Boston Scientific.  They say it is pretty sweet, and I must agree.  But there is no manual.  Actually, there is a manual . . . for the hardware.   Nothing for the combined system of [hardware + me] specifically, though.  So we have to figure it out as we go.

Fourth, the trial and error process takes time.  The brain-machine interface--or even just the brain itself--is no place to be hasty.  I prefer to take it a step at a time, monitoring as we go.  After all, I would not want to give up on the opitimal configuration too soon, thinking it was no good but in reality just not giving it enough time.  I want doctors who see things the same way.

That is where the Cleveland Clinic Lou Ruvo Center for Brain  Health comes in.  This is not a paid promotion for them, but instead it is my experience.  I started there in May 2016, one month after my initial diagnosis.  From then until now, through a series of doctors, nurses, and other staff, my experience tells me that they can be trusted.  If they say these changes can require time to fully take effect, then we will give them time.

Meanwhile, it kills me to not be with the high-speed low-drag group at the gym, doing the hard stuff (Tony's 3D class, and of course Hyrox).  I die inside, just a little, each time I miss a workout or a hike or a training run, or what-have-you.  But I can be patient.

Scratch that, my patience sucks.  I can wait, even if impatiently.  I will bide my time, staying active as much as I can.  All the while I will hope and pray that we eventually find the right set of parameters, the set that will let me be me again.  Let me again run, jump, punch, kick, swim, hike, get stronger, complete (or attempt) obstacles in Spartan races, and endure everything from a Hyrox to a marathon.

Maybe even a triathlon.

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