My wife and I were woken by an early phone call from one of her sons. The upshot was that there was a medical emergency, and my wife left the house to go to Hevingham to accompany her son and his girlfriend to the Norfolk & Norwich Hospital. I email the NHNN to cancel my appointment this afternoon, and reschedule it for next Monday.
I decide to start work on the interview video that I have been asked to do by the Polish Medical Marijuana website and an Instagram account called Truth_Society. I write a script for the video, which I then send for approval prior to actually filming the interview. Hopefully they will have responded by tomorrow morning, so that I can get on with it.
My tremor is quite strong on both sides today, but I can’t go any higher with the left hand voltage, and I don’t want to go any higher with the right hand voltage because dyskinesia is getting stronger in my right arm – I’m not (yet) in danger of throwing my drink everywhere when I go to pick it up, but it takes a degree of concentration to prevent my arm from twitching. My balance is bad today, and coupled with the dyskinesia I must look a bit of a sight when I try to stand up and thrash my arm around as I try to maintain my balance – lucky there’s nobody around to see. Because my balance isn’t too clever, my walking isn’t too clever either. Luckily my dystonia remains well controlled, so I’m not battling that at the same time. I’m still feeling reasonably happy and motivated, although my energy is on the low side – probably because we have had a busy weekend. I self-medicate with cannabis this afternoon and, although my tremor isn’t eradicated, it does make it more bearable.
My wife returns home with shopping and a few bottles of Hobgoblin, so it’s time for dinner and a beer, and then an early night.
Ian,
I think you should have your neuro look at setting a higher range for your DBS – I seem to recall you´re currently set at 1.75-2.15V, which is quite low even for STN. There is nothing special about these levels, and you may get more relief on the tremors than what you´re currently experiencing by having your neuro increase the voltage.
Also have them try a monopolar set-up rather than a bipolar one (assuming that´s what you´re currently on) – that can make a big difference in terms of symptom control as well.
Cheers,
Oliver
Hi Oliver
Thanks for your message – I’ll certainly discuss these settings when I go back for a re-tune next Monday.
Cheers,
Ian