2016-04-21 – Turn it on

Wide awake at 5.30am, still feeling emotionally fragile.  A little while later Diana, one of my favourite smiley nurses, came around to do the blood pressure, pulse, light, questions routine.  She gave me the full benefit of her dazzling smile, and said “Ian, what’s the matter?”. My face crumpled and I just broke down in tears.  The operation never worried me at all, not for a second.  This was different.  The thought of my hardware being switched on and it having no effect on my tremor was almost more than I could bear.

By the time my wife arrived, I had eaten breakfast, pulled myself together a bit, and was sitting with Joseph, the DBS specialist nurse, another nurse who was observing, and Martha Orbach who was also observing.  Originally Joseph had said that he would perform the switch on and initial programming on the ward, but then asked me if I was up to walking to his office because it would be more private.  So, we traipsed around the building for a little while and ended up in Joseph’s office, which accommodated the five of us with no room to spare.

DBS Programmers
DBS Programmers

Joseph put the device programmer transmitter over my neurostimulator implant and switched it on.  He went through each contact (there are four contacts on each electrode) changing parameters (voltage, frequency, pulse width, polarity), and observing me closely, determining which contacts were effective, and the parameters that had the desired effect.

My wife, sitting to my left, watching me intently.  Joseph sitting in front of me with his device programmer.  The observing nurse sitting to his left watching Joseph, watching me.  Martha, watching everyone, I think.

Joseph determined that there were three contacts that were responsive, and set about configuring the ones that he thought were best.  He clicked away on the programmer, occasionally asking me if I felt any tingling, how was my speech, watching my hands, making me do finger taps and hand flashes to monitor my movement.  There would be a tingling in my chin, and then it would go.  My voice would be slow and slurred, and then it would be fine.  My hands would shake as if possessed. and then be almost still.  Finally he stopped, and made me do the usual chin and nose touching exercises, and then to put my hands in my lap and relax.

Hands perfectly still.  Voice close to normal.

I looked at my wife, and she promptly burst into tears.  And then so did I.

Joseph, the other nurse and Martha all hurriedly vacated the room to give us time to compose ourselves, bless them!

My wife and I were just bawling, and then we looked at each other and a second later we were both laughing hysterically.   And then bawling again.  And then laughing hysterically.  I think that neither of us had allowed ourselves to believe that it would have such a good effect, and when it did we didn’t know how to handle it.

Back on the ward, and for the rest of the day, we were fighting our emotions.  One moment we were in tears, the next moment we were laughing.  We simply couldn’t believe how amazing the results were.

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