2016-05-19 – Going back in time

I slept well.  Although I woke at 3am, 4.30am and 6.15am I wasn’t in as much discomfort as previously and certainly don’t recall any thrashing about.  My wife confirmed that I hadn’t been shouting or thrashing around in my sleep, so that seems to be a side effect of DBS – perhaps…

My neck is still stiff, but definitely nowhere near as painful as yesterday – another side effect?

The dyskinesia in my right arm has all but disappeared, so I’m now fairly convinced that it is related to the stimulation rather than the surgery itself.

My wife can hardly believe that I don’t have my DBS switched off.  I do have some tremor in my arms and legs, but not anything like I had prior to surgery.  Maybe it is taking more time to return once the neurostimulator has been turned off.  After all, the side effects do not appear instantly when I turn it back on, taking a day or two to re-emerge.  By the time she leaves the house to go to work, and I am ready to take the dog for a walk, significant tremor has returned to my arms, so I decide to switch myself back on.  I think that the latest settings are not as good overall as the previous settings, so elect to return to the previous settings.  I change my device with the remote control, and then switch it on.  I feel the tingle of electricity throughout my body, followed by an enormous sense of relief.  It is as if I have been consciously suppressing my symptoms through a huge concentration of effort, and suddenly the neurostimulator takes over and that concentration of effort is no longer required.

I feel the need to understand my neurostimulator settings a little more.  Having gone back to my previous settings, I am receiving 2.0v on the left side of my body (1.8v previously) and 2.5v on the right side (2.3v previously).  What I do not know is which contact (or contacts) are being stimulated, or if all other settings are the same.  I will email Joseph to find out.  I feel that I will be able to have more input to my next re-programming if I have a better understanding of exactly what is happening when I switch between settings or adjust the stimulation up or down.

I have slightly more tremor (particularly on my left side) with the old (Group A on my controller) settings compared to the more recent (Group B) settings, but my speech seems clearer to me.  I will try a little cannabis to see if that will assist.

….and… it does!

The Parkinson’s nurse calls me this afternoon, so I explain the situation and she is coming to see me and my wife next monday morning.

My wife seems a little calmer today.  I think she has been under a extraordinary amount of stress, and I haven’t really been helping much in that respect.  I made her take the afternoon off, take the dog for a nice walk and just chill.

Dyskinesia seems to be creeping back in my right arm since I switched my neurostimulator back on, and I feel I’m being a bit loud from time to time.  I’ll give it a good 24 hours before making any further adjustments though.

Okay, I lied.  My wife feels that I have been “just not yourself” today, so I turned my stimulation down on the left hand side from 2.0v to 1.7v to see if it would curb side effects that were reappearing.  I also turned the device off at bedtime to see if it would prevent the thrashing around in my sleep like it seemed to do last night.

No painkillers today!!!!

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