2016-10-10 – A long day…

A long day lies ahead.  My wife and I have a 9am appointment with the Parkinson’s nurse in North Walsham, and then we have to catch the train into London for a tune-up appointment at the NHNN this afternoon.  We arrive in plenty of time to see the Parkinson’s nurse, and she’s very interested to hear about my viral video and subsequent updates. A far cry from the response from Parkinson’s UK, whose immediate response to my posting a link to the video on their forum was to delete it.  They did, eventually, reinstate it, but only after I “outed”them on Twitter for censorship.

Next stop, North Walsham train station, and before you know it, we’re on our way to Liverpool Street station.  We travel first class, because it’s only as few quid extra, and you get free coffee and biscuits, and free WiFi.  Only problem today is that the WiFi isn’t working!  Just as well we have our phones with us and can use the phone network to access the internet!  We arrive in London on time, and roll up for my appointment at least 5 minutes early – a new record!  We have brought a little video camera with us today, in the hope that the DBS nurses will allow us to film me having my device programmed.  They make a few remarks about my Parkinson’s Disease Tremor Control video (in good humour) and allow us to film the programming session, which is great.  Not yet sure where I’m going to use the footage, but I’m sure it’ll come in useful.

My son and his girlfriend are travelling through London today, catching the Eurostar to Paris. We manage to meet up at St. Pancras station after we have finished at the NHNN and we have coffee and a chat before they go on their way.  While we are wandering sound killing time until the Blues Bar opens, I notice some tremor emerging, so we decide to return to the hospital for some adjustments.  This time we get a different programmer, and there’s some confusion over exactly what has been done at the previous session.  Luckily we managed to figure it out, and adjustments are made which send the tremor well below the surface.

Of to the Blues Bar, via Subway, and we are ready for a beer or two and some quality music. We are in for a shock.  I’ve seen some amazing musicians at the blues bar in the past, and I’ve seen some fairly average ones. I’ve never before felt like walking out, as I did today – it was almost painfully bad. In the end, we left early and went to McDonalds to get a couple of McFlurrys on the way back to Liverpool Street station. Very disappointed!

We are on the train back to Norwich now and all we want is to be at home and in bed.

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