I have an appointment to see Joseph back at the NHNN at 10am, so we are up, showered and having breakfast by 9am. The Cotton Rooms is a really nice hotel, and the range of food laid out for breakfast makes choosing quite difficult. I settle for tea, fruit juice, cereal, yoghurt and pain-au-chocolat; and then decide to have bacon, sausages, poached eggs, baked beans and hash browns. By the time we have finished breakfast, it’s almost 9.30 and my wife is getting anxious about the time. We dash back to our room, grab a few things, and then head off on foot to the NHNN.
We arrive at the hospital just on time, but by the time we have caught lifts and walked through a maze of corridors we are a few minutes late. Luckily Joseph is running a few minutes late as well, so it’s not a problem.
Joseph wants to know how things have been, and my wife tells him how surprised she has been at all the changes to me other than the tremor, such as my muscle control. I’m buzzing with it – “Wow, yes, muscle control!” I say to Joseph, “Absolutely amazing! Considering how much laxative I have in my system, I can fart and not follow through!”. Joseph laughs, and then looks at me. “Would you say your behaviour is a little impulsive?” he asked. “Yes! Absolutely!” I say. “Yes!!!!!!!!” said my wife. I had assumed that my state of mind was due to my elation at the success of the operation, but it evidently went a little deeper than that. I was not just on a high, I was saying things that I wouldn’t normally say to people that I hardly knew. My behaviour was also a tad reckless. Joseph explained to us that this kind of behaviour can be one of the side effects of DBS, as well as of the dopamine agonists, but that there was plenty of scope for adjusting my neurostimulator to avoid it. My device programming thus far was extremely basic because he had got a decent response without having to go any further. He changed my settings to utilise a different contact on my electrodes. This setting was not quite so effective at controlling my tremor, but Joseph explained that he would try reverting back to the other contacts in a few days when, hopefully, the swelling in my brain would have receded a little and the side effect would also, hopefully, have receded.
My wife was very relieved. She hadn’t wanted to bring me back down to earth when I was so obviously thrilled at feeling so much better, but she had felt that my behaviour was completely out of character.
My wife had never been to a West End show, so I suggested we go to see one rather than going to the Blues Bar this evening. She is excited about going, but not sure what to go to see, so I ask Joseph for a recommendation. “Les Miserables!” he enthused. “It’s the best show I’ve seen. Don’t forget your tissues though – I’ve been to see it 3 times, and cried every time”. Okay, that was a definite maybe. He also said that he had heard that The Woman In Black was very good as well, if a little frightening.
We set off to Fig Tree House to get some more clothes from my wife’s car, which John and Ruth had very kindly allowed her to park there until I am sent home this Friday. We also drop in to see my mate, Gerry, in his log cabin at the bottom of the garden. We mention going to see a show. “Les Miserables! Fantastic! Don’t forget your tissues!”. That was settled then, provided we could get tickets.
We returned to The Cotton Rooms via the theatre box office, and managed to get the best seats in the house at bargain price. Heated a couple of ready meals up in the restaurant microwave, and tried to rest up a little before going out to the theatre.
I’m feeling much calmer now, and my wife seems a lot less stressed by my behaviour, so I assume that I am now back in character! It’s very difficult to see from my side. I don’t see the body language. The only thing I had noticed was a slightly manic quality to my laugh, which my wife and my pal had not noticed! It took my wife to point out to me that the muscle control remark that I had made to Joseph was not a remark that I would normally have made to someone I hardly knew.
Les Miserables was excellent, but neither of us cried (just as well, because we did forget our tissues), I think we were all emotioned out at that point. We returned to the hotel, grabbing chocolate caramel McFlurrys on the way.