Charlie is going home today, now that they have sorted out a care package for him. My wife and I have a bottle of Jameson’s for him, which he is very pleased about. “You’ve made it almost bearable to be in here” he said, shaking my hand I’ll take that as a compliment, Charlie!
We go to see Joseph for a bit of a DBS tune-up, and he increases the voltage slightly, reining in my tremor once more.
They want my bed as well, and propose putting my wife and I up in The Cotton Rooms and then seeing me as an outpatient for the rest of the week. Sounds good to me! My pal from Brighton is visiting today, and arrives while we are waiting for the pharmacy to dispense my drugs for discharge. Soon we are delivered boxes of paracetamol, codeine, antacids and laxatives, and a huge bottle of liquid laxative. We decide to walk to the Hotel – it’s about a 20 minute walk and I think I can do it if we take it easy, especially since we have my pal here to help us carry our luggage. We arrive at The Cotton Rooms, check in and take our luggage up to our room.
After some recovery time, we decide to go to the Blues Bar for a while, and head off for the underground. My pal is quite keen to get something to eat, but I’m a man with a mission – to get a decent seat in the Blues Bar, where I won’t get my head knocked, before it gets packed – so my wife and my pal trail along behind me. My wife is really quite concerned about me and wants me to slow down a bit, but I’m insistent that I’m fine, just dodging around the dawdling tourists! We stay in the bar for several hours, listening to the live music and drinking pints of cola (no ice!). We get a little something to eat in there – a couple of packets of crisps each. I’m still really “fired up” and a bit loud but that’s only natural, isn’t it? My pal heads off back to Brighton, and my wife and I catch the tube back to the hotel, stopping at McDonald’s on the way to get chicken burgers and ice creams to take to our room.
Hi Ian
I’ve been reading more of your blogs and I’m really surprised by the amount of tinkering you can do with the settings on your machine. I thought you would have to wait for the hospital to make adjustments.
Is it normal for people to switch the stimulator off at night?
Regards
Debbie
Hi Debbie
The hospital can set your device so that you have a “window” of adjustment. They can also give you the ability to switch between different settings. When I went for re-programming on 12th May I asked Joseph to save my current settings in case the new settings gave me side effects that I couldn’t tolerate. He then also gave me a “window” of adjustment – 0.4v above and 0.4v below the settings that he had programmed. So, he programmed 1.5v on the left side, and 2.0v on the right, and I am able to change the left setting from 1.1v to 1.9v (in 0.1v increments) and the right setting from 1.6v to 2.4v. Changes can be made if I feel that I require more, or less, stimulation.
I don’t know if it’s normal for people to switch the neurostimulator off at night, just that that seems to work for me at the moment. As you know, when you are asleep you do not have any tremor, so the stimulation received during sleeping hours is unnecessary. I felt that that was causing me a problem, so now switch off. The added benefit is that my battery will last longer! If the tremor prevents me from getting off to sleep, then I’ll have to re-think!
Regards
Ian