I know that I have been very quiet and not posted to this blog for some time – there has been a lot going on!
Firstly I am now a father – my daughter is the most amazing mini-human in the world to me. She looks so much like her mum that it scares me a little bit sometimes. This has not only been one of the most exciting things that has ever happened to me, it has also been one of the most stressful and testing things – because, you know, parenthood is supposed to be walk in the park. </sarcasm> For obvious reasons, I’m not putting her name or any personal data about her on here – but I am going to share this picture, taken shortly after her birth! 🙂
Whereas becoming a father was sort of expected and had quite a long leadup – I couldn’t post to this blog without mentioning it!
So, back to the subject of unexpected happenings – the most surprising thing that has happened in the time between now and my last post to this blog is just as life-changing. It took several years of hit and miss and finally a “happy accident” damaging some of the implanted DBS equipment a tiny bit – but I am basically tic free for the first time in my memory!
A bit more in depth information behind this – and something that I’m not sure if I have written about before was the reaction that I had to one of the contacts in the post-op screening. The screening involved them running a wide range of settings through every electrode and observing the immediate effects. One contact in particular gave me a slight reduction in tics, but the first time that they ran a high current through it – it caused an immediate fight or flight type of response. I had to rush to the toilet and then started to shake quite violently until they turned it back off. This was reproduced again to a lesser degree in a blinded test (during the week that I spent in London after they switched it on) on a lower setting.
So that contact was left alone and eventually a combination (the top two on either side) was found that seemed to have at least some impact on my tics. However the impact was fairly minimal in terms of actually improving my ability to function. Then, at some point between the battery starting to run flat a few years sooner than expected and having to be replaced with a rechargable one, that minimal impact disappeared and things started to get considerably worse again.
Then roll on January this year. It was discovered that the top contact on one side had increasingly high impedance. (See atrocious MS Paint diagram no. 1 above) What this means is that one of the tiny wires inside the cable that runs up the side of my neck has fractured or become otherwise damaged. As an experiment they decided to move the stimulation down on one side but leave it unchanged on the other (see atrocious MS Paint diagram no. 2 below for a bit of clarification on this).
What I didn’t realise was that this meant activating the contact that had caused the horrible reactions before. It is an almost impossible type of dread to explain, possibly because it originates from a bit of metal inside my brain – but the closest that I can get to it in text is as follows: Imagine a vertical drop rollercoaster/fairground ride. For this example I will use Oblivion at Alton Towers – combine a constant stream of that surge of adrenaline the first time that you drop on that with a feeling of dread sitting like a ball of lead in your stomach and that should get you most of the way there. (Scratch that… easier than I thought to explain the basic feeling.)
I decided to stick with it, not knowing what contact exactly had caused that effect before and there is usually a degree of anxiety mixed with an energy-surge type feeling that I genuinely can not explain at all (I mean it this time!) after a major adjustment or even a diagnostic test like the one that they use to check the impedance and general function of the device.
I’m not going to sugar coat it, the first few weeks were hellish. On the journey home in the transport ambulance I clenched my fists so hard on the side-rails of the stretcher that they both locked and hurt for days and my tics were largely unaffected at first. But after a month or so, I started to see some improvement. And then about a month and a half ago, it all happened at once. The feeling of dread went away and my tics started to calm! When it actually happened, it was so fast that I could barely keep up with my own improvement!
The finest moment for me so far was this week – I had to go to London to see the DBS team – so I decided to do it alone, by train – without the wheelchair. I arrived at the hospital completely unscathed and I honestly think that the DBS were as over the moon as me! I was able to sit there and chat about the tics (previously, this would make the tics get worse) and I got my lowest score ever on the YGTSS (Yale Global Tic Severity Scale) – it has gone from the high-nineties to mid-teens in the space of a couple of months!
Which leads me to my final unexpected announcement:
I start my new full time job on Monday next week!
**Bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias – see what I mean – that word is now ruined for me for today.