We are off to the NHNN today for a bit of device tweaking. I’m awake at 6am, but snooze (I switch my neurostimulator on to control the tremor) until the alarm goes off at 7.30am.
My wife makes the tea and coffee and then takes the dog to Hevingham where she will stay with her youngest son, his girlfriend and their 2 dogs until tomorrow. I make sure we have all of the essentials for the trip: train tickets, sandwiches, phones, phone chargers and iPads.
We arrive at the station with literally seconds to spare, walking onto the platform just as the train draws up. The journey passes quickly, and before long we are in Queen Square for my 2pm appointment.
Joseph listens to what we have to say as we report on settings, effects and side effects. Then he is busy with his device programmer. I alternate between uncontrollable shaking and an almost unnatural calm as he strives to find the most effective settings for me. Eventually he appears satisfied, and checks on my walking and voice to ensure that they haven’t been adversely affected. We are sent away for an hour to see how the new settings settle in, and spend our time in the cafe having coffee and then walking around Queen Square in the sunshine. We report back. No further adjustment is considered necessary, and Joseph gives me a little more adjustment to play with, should I need to do so (0.6v either side of the settings, rather than 0.4v as previously) and also allows me to fine tune adjustments in 0.05v steps, rather than 0.1v steps. All in all, a successful visit.
We depart the NHNN and decide to walk to the Blues Bar to while away a couple of hours until we catch the train home. It’s only a mile away and we have over an hour to get there before doors open, but it’s a major struggle for me. We sit and rest for a while. On arrival we bag our favourite table and I revitalise myself with a pint of Adnams Ghost Ship. A couple of pints later we make our way back to Liverpool Street station and board the train back to Norwich.
Symptoms: tremor – virtually none; dyskinesia – virtually none; dystonia – virtually none; balance – fair to middling; energy and motivation – yet to be determined.
We arrive home at 11.30pm and get ourselves straight off to bed. This time I’m leaving my device switched on to see if the “thrashing around” side effect has been sorted out as well.