I’m off to the NHNN today for an appointment with my London neurologist, so my wife drops the dog off at her youngest son’s house in Hevingham first thing this morning and we head off to Gunton station to catch the 10.07am train to London.
We arrive in plenty of time, intending to go to see Martha Orbach’s “White Out” exhibition prior to my appointment, but ending up sweaty and exhausted after trying to find it, only to realise that we were in the wrong building! Okay, appointment first and then exhibition…
I get the customary 15 minute audience with my neurologist who, whilst being very personable and vastly more educated than I, doesn’t really address any of the issues that I’m currently experiencing with my DBS. She does, however, get me an audience with one of the speech therapists who reckons that my speech problems are due to stimulation rather than disease progression, which is a major comfort to me. He says that he will schedule an entire afternoon appointment with himself, a DBS nurse and a neurologist to give my DBS programming a thorough shakedown to see if they can find settings that don’t make me sound as if I have recently drunk a bottle of whisky. This is what I was hoping was going to happen today, and I had already tried to book an appointment with the DBS nurse for today but, as is usual (unfortunately), the patient voice isn’t given due consideration, so I was refused an appointment on the (incorrect) basis that I was seeing my neurologist, and if any adjustments were deemed necessary then she would make them. I’m sure that it is of little consequence to them, but another appointment means another day that my wife has to take off work, and another £100 in travelling expenses.
After leaving the NHNN we catch the tube to Warren Street and get to see Martha’s exhibition, which is brilliant – I recognise myself in some of the images, and some of the words that she used to accompany her artwork were mine also, so I felt extremely honoured.
We head off to the Blues Bar (via McDonalds) to listen to some live music and sup a beer or three whilst killing time until our train home.