2016-05-30 – A cold day in Norfolk

Slept a little better last night – well, until about 5am.  Then drifted in and out of sleep until about 9am, when I crawled out of bed and put the kettle on.  Switched on the neurostimulator – I’m getting used to the odd sensation, the tingling that spreads throughout my body in a matter of 2 or 3 seconds and leaves me feeling “Wow!”.  I’m actually starting to enjoy this – I wonder if it’s addictive!

The rest of the country seems to be basking in sunshine and enjoying temperatures in excess of 20 degrees centigrade.  Here in Norfolk it’s about 15 degrees, overcast and blowing a strong chilly wind.  We were planning to stay another night on the boat and get up early tomorrow morning to go home, but decide to call it a day.  We pack up and load my wife’s car with all of our junk, and head back to Southrepps via the supermarket in North Walsham.  It’s so chilly that I light the woodburner for the first time in about 3 months!

Sitting  in the lounge, warm in front of our woodburner, watching videos of BBC Radio 1’s Big Weekend – I notice that my left leg has stopped shaking.  Just for a little while, but this is progress.  Left arm still has some tremor, and right arm tremor has definitely got significantly worse since I turned down the stimulation on the right hand side.  Dyskinesia still there but definitely less so.  Dystonia alive and kicking, but bearable.  My lower back is extremely painful, though, and I have to do some exercises to alleviate the pain.  It’s the first time in a long time that my primary discomfort has not been Parkinson’s Disease!

Another 0.1v added to my left side at bedtime, and then the power is switched off for the night.  Tremor is fairly quick to return when I switch off, although not as dramatic as some of the videos I have seen on YouTube would suggest.  I assume that at some stage my Parkinson’s will progress to a level whereby my tremor would keep me from getting to sleep if I turned my device off – perhaps it will be necessary to leave the neurostimulator switched on but at a reduced voltage in order to avoid the “thrashing about” side effect.  I guess that time will tell…

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