2016-09-19 – Censored… Really???

Another lousy night!  I had trouble getting off to sleep again, and then woke countless times with dyskinesia causing me to thrash about, and bad lower back pain (in spite of reducing my device voltages before climbing into bed).  Tremor in my left leg (mainly) was also prevalent, due to the lower level of stimulation.  When I get out of bed, I immediately change my device settings back (to 1.75v on the left and 2.2v on the right) in an effort to still my tremor.  It works, to a degree!

Downstairs, I drink my tea and Nutriblast (prepared by my wife, who also had a bad night – not sure who was disturbing who!) and check on my emails and YouTube video viewing figures.  Over 40,000 views!  There is an email in my inbox from Parkinson’s UK – they have removed a forum post that I made about my video, because I’m in breach of a forum rule “not to discuss, promote or threaten illegal activity”.  Okay, hands up on the “discuss”, but I feel my video neither promotes nor threatens illegal activity, and there are many other threads within the same forum that discuss the use of cannabis, including one that links to 3 YouTube videos that discuss the use of cannabis for Parkinson’s Disease tremor.  I feel unjustly censored – I made every attempt to make my video factual, neutral and unbiased.  Never mind, none of the other sites that I posted (the same message) to, seem to have any such problem with it.

I take the dog out for a quick walk before Popmaster, and then assess my situation…  Tremor on my right hand side is pretty much under control, tremor on my left side seems to be confined to my leg, but it is extremely annoying!  Dystonia seems under control, and, although my walking still isn’t great, my balance doesn’t seem to be too bad.  My voice isn’t as strong as it could be, but it could be an awful lot worse!  Mood and motivation are okay, but my energy levels are low and I feel fatigued.  I would increase stimulation on my left hand side if I could, but I am already receiving the maximum voltage allowed (by my device programmer) for the current program (Group “B” settings).  I go to check on train prices to see when it’s going to be economically viable for me to travel to London for a re-programming session.  It looks like next week is favourite, so I need to email the DBS team at the NHNN to see when I can get an appointment…  I self-medicate with a little cannabis and that helps.  I will do so again just before bedtime tonight, and see if that helps me get a better night’s sleep.

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