2016-05-18 – Side effects

I woke just after 5.30am in extreme discomfort with my head and neck.  I got out out of bed and dressed almost immediately, not wanting to disturb my wife.

When she awoke and came downstairs, she told me I had been thrashing about in the night and making a lot of noise.  Generally, she felt, I was not entirely in character.  She was extremely agitated and tearful, especially since she felt she hadn’t been told about the possibility of this side effect.  I couldn’t remember being told about it either, but I’m sure we would have been.  There is so much information to take on board, and if it had just been mentioned in passing there is every likelihood that we would not have absorbed it.  I’m going to turn my stimulator off tonight to see if it makes any difference to my sleeping pattern and/or the thrashing about.

My neck is extremely sore and stiff today, and I started (and ended) the day with paracetamol.  I notice that the dyskinesia is getting worse, but only appears to be affecting my right arm.  My balance is still not great, but I still haven’t actually had a fall.  I’ve been able to catch myself before falling, so far!

Decided to call the Parkinson’s nurse to see if she could offer some advice or counselling to my wife.  Still waiting for them to call me back, but I don’t hold out a lot of hope since I really need someone who has some experience with DBS and its side effects.

I decide to self medicate mildly this evening (cannabis and alcohol) and achieve a good state of relaxation.  DBS turned off around 8.30pm.  I feel the difference throughout my body as the neurostimulator is switched off, but my tremor doesn’t return immediately as it has done previously when Joseph has switched it off during re-programming.  I can only assume that the cannabis and alcohol have things nicely under control.  My wife has not noticed any difference yet (I haven’t told her I have switched off yet).  When I go upstairs to have a bath, I notice that the dyskinesia in my right arm is significantly reduced – I really hadn’t expected that.

I notice tremor creeping back (left leg, mainly) when I get into bed, but it doesn’t prevent me from falling asleep.

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