2016-05-29 – Taking stock

Dreadful night.  Awake and uncomfortable for most of the night.  I’ve always found the bed on the boat extremely comfortable, if a little short for someone over 6 feet tall, but it has now given me a fair amount of lower back pain.

I get up just after 7am.

On with the power.  The tremor in my left arm is well controlled, but my left leg isn’t.  I have moderate tremor in my right arm, but almost none in my right leg.  Dystonia hasn’t shown its face this morning, but dyskinesia is back almost immediately, although less severe than it has been.  All in all, not too bad!

Assessing things so far…  My neck is still quite stiff, but nowhere near as sore as it was when I was leaving the neurostimulator on all night.  My head is no longer so tender to the touch, although it does feel weird with all its new lumps and bumps, and although not completely numb all over, it does have a multitude of numb spots.  As far as my mental condition goes, I’m much more positive and motivated.  I also have an appetite again and there its a real danger that this, coupled with the fact that I’m not shaking so much, will result in me putting weight on.  Joseph told me, when I went back for re-programming this month, that most DBS patients put weight on, so that’s something I’ll have to watch.

I’m really pleased that my dyskinesia has calmed down, and the dystonia in my foot hasn’t been as bad as I had feared.  I have been keeping things under control with cannabis and alcohol when necessary, though.  My wife doesn’t like me self medicating, but in reality it’s no worse than taking Parkinson’s drugs, which most people with Parkinson’s have to take, even after having DBS surgery.  Parkinson’s medication either has no effect on me whatsoever, or it makes me feel so ill that I’d rather put up with my symptoms.  I’ve tried every drug that my neurologist has prescribed for me and the only one that has had a positive effect also made me feel extremely unwell, all of the others just gave me side effects without any benefits.

My brother was also on the river on his boat this weekend, with his son, grandchildren and our mum (who has advanced Parkinson’s Disease – over 20 years since diagnosis). They had headed off to Barton Turf to meet with friends for a barbecue.  Because we weren’t leaving the marina in our boat (I decided that if I wasn’t allowed to drive a car just yet, then I probably shouldn’t be in charge of about 2 and a half tons of boat – even if it is only going along at 4 miles per hour), we drove there to be sociable and have a drink and a chat. My mum was almost out of it when we arrived, and half an hour later was slumped over in her chair and had to be propped up with cushions.  She had taken her Parkinson’s medication an hour before, and this was the result.  I count myself very lucky not to be heading down the same road as her – at least not at the moment!

I still get really tired at the drop of a hat.  It’s as if my body says “Enough!! Down with the shutters!”, and I have choice but to comply.  My body issued the order to shut down, so we made our way back to our boat for the night.  Added another 0.1v to the left hand side (up to 1.4v now) and then switched myself off for the night.

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