2016-08-03 – Tune-up time

I have an appointment at the NHNN today to have my device reprogrammed.  My wife takes the dog to be looked after by her son for the day, and the rest of us get busy making sandwiches, getting paperwork together, making sure we can leave home at 10am.  My appointment is at 2pm, and it’s about a 3 hour trip by car.  My son is driving us today so that we can all go to the Blues Bar after my appointment – something he has wanted to do for a very long time.

We eventually leave the house at 10.15am, so I’m already getting stressed about time.  We have a good trip down and, even with a stop at Birchanger Green Services, the satnav is projecting an arrival time just after 1pm.  Even a wrong turn when we leave the M11 doesn’t add more than a few minutes to the trip.  Then we hit the traffic, and my stress levels are going through the roof.  My wife calls ahead to let the hospital know that we will be late – it’s almost 3pm by the time we get arrive at the NHNN.  Travelling by train is so much less stress, and I remember why we stopped driving to London for our appointments now.

NHNN
National Hospital for Neurology & Neurosurgery

Maricel ushers us into an office, and we sort everyone out with chairs.  She gives me an in depth interview about my symptoms and settings, checks my gait and posture and then sets about programming my neurostimulator.  30 minutes later she has completely revised the settings for both Group ‘A’ and Group ‘B’ on my device.  I feel instantly better, and my children are amazed at the difference in me – I don’t think they had appreciated the effect on my mood (and even my facial expressions) that DBS can have.  I feel happier, more motivated, my walking is better, my posture is improved, my tremor is back under control, my dystonia has all but disappeared and I’m thankful for the miracle that is deep brain stimulation.

We go to McDonalds on our way to the Blues Bar, and sate our appetites with chicken wraps, cheeseburgers, shakes and McFlurrys – dreadfully unhealthy stuff, but it’s only once in a blue moon.

bluesbarlogoThe next few hours are spent in the Blues Bar listening to some quality live blues, and quaffing Adnams Ghost Ship.  It’s gone 10pm by the time we get back to the car park under Euston station, and we don’t get home until almost 1.30am.  I’m completely shattered, and I’m relieved that it wasn’t me driving us back to Norfolk.

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