A couple of weeks ago I saw a post by a friend on Facebook that made me stop and think. The post was by Georgie who, like me, has Tourettes. Georgie has recently undergone neurosurgery as part of a trial currently being carried out in the UK. The treatment’s called Deep Brain Stimulation (DBS) and while it’s been used successfully for a number of other movement disorders its use in treating Tourettes is relatively new.
I’ve written about DBS before and have always felt it wasn’t for me, but Georgie’s post made me curious. She described the moment the electronic stimulators that had been inserted into her brain were turned on and tested. Her account of what happened and how it felt was compelling. It made me keen to find out more so I asked if she’d be happy to be interviewed. She said yes, and our conversation follows below and just so you’re not confused, I’ve left our tics (in grey) in the transcript so you can get a sense of their intensity.
Photo: Nathan Colquhoun
TH: I was really interested by your post hedgehog biscuit on Facebook about having your stimulator turned on, fuck, biscuit. Before I get to that, biscuit, tell me about your journey with Tourettes Syndrome.
GH: I’ve got late onset Tourettes, fuck off, shit bag. I had my first tics aged about 23, fuck off, bastard, and there was nothing in childhood, shit bag, that anybody can identify, or that I can remember, shit bag. They started in terms of motor tics, fuck off bastard, being quite violent, shit bag wanker, punching and kicking things, shit bag wanker, and a lot of muscle contracting. I had no idea what it was, shit bag wanker.
But it would only come on for a few hours or maybe a couple of days, fuck off bastard, and then there would be several months with no tics. So when I first went to the doctors with it, shit bag wanker, I didn’t feel I was taken seriously. I’d make the appointment, and then I’d go, shit bag, and then I wouldn’t be ticcing, shit bag, so they couldn’t see what I was talking about. They put it down to depression, shit bag wanker. I was definitely depressed at the time, shit bag wanker, and had had problems with that for quite a few years, but to me it felt like it wasn’t that, shit bag wanker bastard.
So after going a couple of times, even when they did see the tics, shit bag, they just said, ‘You’re stressed, you’re doing too much, calm down.’
I realised that the periods between being tic-free, shit bag, were gradually reducing, shit bag, wanker, and about three and a half years ago, fuck off, I noticed that the motors were happening every day, fuck off shit bag. This is when my GP referred me to a neurologist, fuck off. It took quite a long time to get an appointment, shit bag wanker, and in that time, fuck off, the motor tics actually increased. Fuck off, you bastard! It wasn’t until eighteen months ago that I was diagnosed, bastard, when I started making kind of ‘Whahoo’ noises, which soon became words, which then became sentences, and then the swearing started and hasn’t stopped, shit bag wanker bastard, fuck off shit bag.
Although I’ve always worked in health and social care settings I’d never met anyone with Tourettes, shit bag, and I knew very little about it, shit bag. But when I went to a support group I knew I had Tourettes, shit bag. When I was diagnosed I felt a lot of relief because for several years I just, fuck off, felt as if people thought I was doing it on purpose, I thought I might be doing it on purpose, and the guilt that I carried, shit bag wanker, was immense.
Since diagnosis, the rapid and very unusual escalation of my tics has meant I can’t be quiet, fuck off wanker, shit bag, bastard – the only variation in the vocals is that I get louder at different times, shit bag wanker – and I can’t keep still.
The intensity of the tics is quiet severe and they’re constant, so I suppose for me, shit bag wanker, because I can remember what it’s like to be able to be quiet, fuck off, bastard, and keep still, it’s been a very difficult time, fuck off wanker.
TH: What impact, biscuit, were the tics having on your life? Biscuit.
GH: Fuck off. Initially I was scared of what was happening, particularly because I didn’t know, fuck off shit bag, what was going on. But then, fuck off, it just became part of something I had, shit bag, and because I was still able to do stuff most of the time, shit bag, it didn’t really cause a problem, fuck off – until about three and half years ago when it was happening every day, shit bag.
I was getting very tired – my suppression skills used to be very good and they were slowly deteriorating, fuck off bastard, I was starting to experience pain, shit bag wanker bastard, and the ‘tic attacks’ that I’d had for a number of years, shit bag, really intensified and became very violent. I have them quite regularly now, fuck off you bastard, shit bag.
Within a couple of years really, my world’s got a lot smaller, shit bag, wanker. The things I used to take for granted, going out on my own, going for a coffee, fuck off and reading a paper, shit bag wanker, I feel like I can’t do now, shit bag wanker. I know technically I can, but it’s hard – not only because of the negative reactions but because of how I feel about how other people are going to react, particularly when I’m on my own, fuck off.
I used to love going to the theatre or the cinema, and I can’t do that now. I used to watch a lot of live snooker, fuck off, and I can’t do that either, shit bag wanker, fuck off. I was an advocacy worker, shit bag, for people with learning disabilities, fuck off you bitch, and as the tics were getting worse, my employers were very supportive, fuck off, but obviously a lot of people I was working with couldn’t understand, shit bag wanker, that I wasn’t swearing at them, fuck off wanker. I had to support people through court proceedings, shit bag wanker, fuck off, and at very important meetings, shit bag wanker, and it just was unworkable. Fortunately, they’re keeping my job open for me for a while, fuck off bastard.
I think the biggest impact is that a lot of the things I used to do on my own, fuck off, wanker, now have to rely on other people, shit bag wanker. I can’t do things on the spur of the moment, everything has to be planned, fuck off. And even if I do plan something, fuck off, on the day I don’t know if I’m going to be able to do whatever it is I’ve planned.
Being in constant pain means that everything is such an effort, fuck off wanker, a lot of the time I just can’t be bothered, fuck off, wanker. I don’t want to sound too negative, because there are still things I can still do, but there’s no getting away from the fact that there are a lot of things I can’t do now.
I used to be very sporty, fuck off, I used to do line dancing, shit bag, wanker. I can’t do any tasks or activities standing up because I squat, or my knees bend or give way, and because my walking’s very chaotic, fuck off, bastard, I lift my legs up a lot of the time, so I can’t even dance. That’s a big part of my social life, shit bag, that I can’t now access, shit bag.
But I’m very lucky – I’ve had a lot of support, fuck off wanker, from my mum and my friends and I’ve met so many amazing and very kind people in my support group and through Tourettes Lifelong Care (TLC) shit bag, I don’t know what I would’ve done without them shit bag.
TH: You mentioned ‘tic attacks’ earlier, biscuit, could you describe what you mean by a tic attack? Biscuit, fuck.
GH: I would describe it as, fuck off, a temporary episode, fuck off, where I have, fuck off, no control at all over my motor or vocal tics, shit bag wanker bastard. I know some people call them ‘tic fits’ but for me I’ve always been conscious at the time, shit bag wanker bastard, so I don’t know if the word ‘fit’ is helpful because people then think of seizures, and it looks very much like a seizure because my motor tics become very violent, shit bag wanker bastard, and I’ll kick and hit whatever there is, shit bag wanker, including myself which has been quite worrying. They can last for anything from five minutes, fuck off, to an hour. They’re the worst part of having Tourettes because it’s hard, fuck off wanker bastard, doing anything else for the rest of the day. I don’t know how the body does it – it’s amazing.
TH: Your tics, biscuit, and your journey with Tourettes, biscuit, sounds very similar to my, biscuit, experience as well, fuck, biscuit, hedgehog, biscuit. Could you say a bit about what Deep Brain Simulation is? How would you explain it to someone who knew nothing about it?
GH: Basically, it’s a neurosurgery, fuck off, where two electrodes, fuck off wanker, are planted into the brain, shit bag wanker, attached to a wire, fuck off wanker, that goes under the skin, shit bag wanker, and is connected to a DBS device, or a stimulator like a battery, fuck off, that’s inserted under the skin in the breast area, fuck off you bastard. When you attach a programmer to the device, shit bag wanker bastard, it stimulates certain areas of the brain, fuck off, which are felt to be, fuck off shit bag wanker bastard, helpful in reducing tics, shit bag wanker bastard.
For me, the location of the electrodes is in the GPi, the globus pallidus interna, fuck off wanker, and there’s still a lot of debate, shit bag, about what the, fuck off, prime location, fuck off, is. Shit bag wanker.
But basically, electrical activity is used to try and, fuck off, reduce the brain messages, fuck off, that are getting mixed and muddled which causes the tics, and that’s as much as they know really.
TH: And how, biscuit, did you reach the decision to go ahead with DBS? Fuck.
GH: It definitely wasn’t a decision I made lightly. Wires in my brain! It was something that took me, fuck off, several months to decide. It was mentioned to me when I was first diagnosed, shit bag wanker, and I was very scared by the idea of it and kind of thought ‘Well no’ because at the time I was struggling but I was able to manage my tics and still do things, shit bag wanker. After a few months I went to see the neuropsychologist, shit bag, and they said, shit bag wanker, because I’d tried various medications, fuck off wanker, and none of them had had any impact on the tics, shit bag wanker, fuck off, they would refer me for DBS.
When they referred me, fuck off bastard, I was sceptical and thought it wasn’t something I’d actually consider, but I felt it was good that I kept an open mind, shit bag wanker, although I was adamant it wasn’t something I’d consider. But as the tics got worse, shit bag, and after spending hours doing research, shit bag wanker, and talking to people, I decided it was the right choice for me.
There are risks associated with the surgery, fuck off, a lot of which are unknown, but, shit bag wanker, whatever happens, fuck off, even if this surgery’s very successful I know I’m always going to have Tourettes, and I can live with that, shit bag wanker, I just want to have less severe tics, shit bag wanker bastard. So really I chose DBS, shit bag, to improve my quality of life.
TH: How did your friends and family, biscuit, fuck, respond to your decision to, biscuit, go ahead with DBS? Fuck.
GH: Even before I openly told anyone, shit bag, I think people knew I’d decided. When I initially, fuck off, talked about DBS, everyone was very much like, ‘Oh my God no, you can’t have that!’ It was quite a difficult time to have a conversation with people about it because they were very scared, shit bag wanker bastard.
Because people have seen how quickly my tics have escalated, and the impact, fuck off, they’ve had on my life, shit bag, they’ve been very supportive and interested. Not just people I know either, but people I don’t know well at all have been curious too. That’s the thing with Tourettes, shit bag wanker, because it’s so obvious, shit bag, that you have it, shit bag, it’s hard to keep things private, shit bag wanker. I used to be a very private person, and in some ways Tourettes has made me a lot more open, which is a good thing.
TH: What did the doctors, biscuit, say were the risks of the operation?
GH: There were risks of, fuck off, brain haemorrhage, fuck off, stroke, fuck off, epilepsy, fuck off bastard, infection, shit bag and the risk of my body rejecting the device, shit bag wanker bastard. But also my medical team were very open and honest about it and said ‘There’s so much we don’t know – a lot of what we’re telling you comes from people who’ve had DBS for other movement disorders in different locations of the brain. So whether it’s all comparable, who knows?’ Shit bag wanker bastard.
TH: Tell me about the process of the trial, biscuit, and how long it is. Fuck.
GH: Being part of any trial, shit bag wanker, means that you have more appointments and assessments, shit bag wanker. For the initial appointment I stayed in hospital, shit bag wanker, and had two days of tests, shit bag wanker. They filmed my tics while someone was in the room for five minutes, while they were out of the room for five minutes, me trying to supress the tics, shit bag wanker, etc. There were also quality-of-life assessments and psychological assessments, fuck off wanker. These assessments have to be done, fuck off, every six weeks for a year, shit bag wanker bastard.
In terms of the stimulator, fuck off wanker, that’s switched on, fuck off, or off every three months for twelve months. With the switch on, it can either be ‘on, off, on off’ or ‘off, on, off, on.’ It can’t be ‘on, on, off, off.’ So, shit bag, it means that I have to go every week for six weeks, fuck off, and they’ll gradually increase the setting, shit bag wanker bastard, or pretend to if I’ve been switched off, shit bag wanker.
People think once you have the electrodes in, you switch on, and it’s either on or off, shit bag, it’s not. There’s the voltage, shit bag wanker, the frequency, shit bag wanker, and the pulse width. I believe there are about sixty two different combinations, so it’s not straightforward.
TH: Were there any preparations that you needed to do on the run up to the operation? Biscuit, hedgehog.
GH: I’d never had any surgery before so it was all new to me, shit bag wanker bastard. I had an appointment with the neurosurgeon, fuck off, which was really good because I was able to ask lots of questions, fuck off bastard. Again, a lot of the questions no one knows the answers to, but I had the opportunity to ask, shit bag wanker. I also decided to shave my hair off, fuck off wanker bastard. You don’t have to, shit bag wanker bastard, but I felt it was better in terms of keeping the scar clean, shit bag, wanker.
TH: What happened on the day of the surgery?
GH: I had to be there for seven in the morning, shit bag. They tried to get my blood pressure and so on, which is never easy, fuck off wanker. I went into surgery at about nine or nine thirty, fuck off wanker, and I didn’t come round until quarter past six at night, shit bag wanker. I was fortunate to have the surgery under anaesthetic so I was completely sedated – so that was the easy bit for me.
I’ve got no recollection of the actual procedure because I was asleep, shit bag, but I know that everything was done for me in one go, shit bag wanker. They scanned me, shit bag wanker, to work out where to put the electrode, shit bag and they put in the electrode and the stimulator in the same day, shit bag. Some places do it as two separate surgeries, shit bag. Then they scanned me again to check that everything was in the right place, shit bag wanker, and waited for me to come round, shit bag wanker.
Then I went to a high dependency ward, fuck off wanker, where I’d got all sorts of everything on, shit bag wanker bastard. I was setting all the alarms off because I couldn’t keep still, shit bag wanker bastard. But the staff were really good, shit bag wanker bastard, and I was in for two nights before being discharged, fuck off.
TH: And how did you feel in the following days?
GH: Very confused for a few minutes due to the effects of the anaesthetic, shit bag wanker. I remember being asked what day it was and I was convinced it was Christmas! I was hoping for what’s called the ‘stun effect’. Some people, fuck off, experience very little tics, or no tics at all, shit bag wanker, for a couple of days maybe. I know someone who had DBS who didn’t tic for two weeks, shit bag wanker, before they came back. So I was hoping I was going to get that temporary release, but as soon as I came round I was effing and jeffing away, shit bag wanker bastard.
My head felt very heavy, shit bag wanker bastard. I had very little sensation in it – because they’ve cut the nerve endings in the front and it can take several months to come back. So I had a lot of pain, not quite a headache, and I was getting nerve pain as well, shit bag. I’ve still got a bit of that, in my head, and I’m still getting headaches but they’re decreasing. I was also very sick for quite a few hours, shit bag wanker bastard, I couldn’t keep anything down, but they push fluids into you in hospital and that’s quite normal. What was marvellous was being on Morphine, shit bag wanker. It really helped with my aching muscles. I wanted some for when I went home!
To be honest, considering what I had done, shit bag, I didn’t feel as bad as I thought I would, shit bag wanker, but I didn’t really know what to expect, fuck off, bastard. The day after the surgery I was able to walk again, shit bag wanker, and not feel too bad. I’ve been very tired though – I slept a lot, for the first three weeks particularly.
TH: Tell me about the day the stimulators were switched on and checked, biscuit, fuck.
GH: I woke up to a tic attack, which wasn’t a good start, so I was knackered before I even got there, shit bag. My appointment’s in a ward where I get my own room, shit bag wanker bastard, which makes life a lot easier, shit bag wanker bastard. The neurologist, shit bag wanker bastard, brought the programmer with him, because with me on the trial I’m not allowed to have access to that obviously, shit bag wanker bastard. And he tried out various setting, shit bag wanker.
On each, fuck off, electrode there are four contacts called pods, so he stimulated each one individually at various levels, fuck off. I was very anxious about it, shit bag wanker, it sends electrical impulses to the brain after all, shit bag wanker. I was also very excited and very hopeful about what it could do.
Obviously, he had to switch it on to check everything, shit bag wanker, and all of a sudden I felt this wave of calm, shit bag wanker. I suppose I must experience a lot of internal tension associated with the tics, shit bag wanker, and that just seemed to go, shit bag wanker bastard. It was marvellous – I was quite astounded. Gradually, shit bag wanker, my vocal tics, though they were, fuck off, shit bag, fuck off, constant, shit bag, still, fuck off wanker bastard, they didn’t have as much force in them, fuck off, wanker, shit bag. And as he increased the frequency, my motor tics gradually reduced, shit bag wanker. I just couldn’t believe it, shit bag, wanker bastard, and it gave me a lot of hope.
I videoed myself, shit bag, wanker, because I could actually walk, shit bag wanker bastard. I went to the café, shit bag wanker, my vocals didn’t escalate like they normally do in busy environments, shit bag wanker, and I carried a tray of drinks, shit bag wanker bastard, from the counter to my mother, with only the odd leg tic.
TH: Was that, biscuit, with the stimulator still switched on?
GH: I don’t know! What he did say was that even if it’s on, shit bag, they have to start of at a low voltage, shit bag, so at the moment I know that if I’m on it’s between 0.5v and 1v, bastard. They can’t go any higher than 5v, but it was at 5v that I felt calmest, fuck off.
TH: Do you have a strong sensation associated with your tics?
GH: I get a lot of electric shock sensations and the feeling of insects crawling all over me, shit bag wanker bastard. Those sensations massively improved, shit bag wanker bastard, and I hardly felt them for those few hours. Over the next six weeks they’ll gradually increase it up to 5v or, shit bag, they’ll pretend to, shit bag wanker. Then I’ll wait six weeks and see what happens and then we start that process again, shit bag, fuck.
TH: What are your hopes, biscuit, for DBS? Biscuit, fuck.
GH: I suppose if I’m honest, I have very high hopes, shit bag wanker. I say to people, ‘I’m realistic and it might only reduce my tics a little bit,’ shit bag wanker, but I really hope that I have a massive tic reduction, shit bag wanker bastard – particularly in terms of my vocals, shit bag wanker bastard, I find those most problematic, fuck off, wanker. I’d like them to reduce enough so I can go to the theatre, watch live snooker, fuck off wanker, go out on my own and feel comfortable and go back to work. Shit bag.
TH: Has, biscuit, anything surprised you, biscuit, about the process so far? Fuck, hedgehog.
GH: It’s hard to know how much of the tiredness is due to tics and how much is the surgery, shit bag wanker, but I felt quite spritely quite soon afterwards, fuck off, and I was shocked at that, fuck off wanker bastard, because I thought it’d take longer.
A couple of people had mentioned about this feeling of calm, shit bag wanker bastard – I didn’t really know what they meant. Now I do and I want more of that! Shit bag wanker bastard.
TH: Georgie, thank you. Biscuit.
I found talking to Georgie about her experience of DBS fascinating. I was struck by how similar her journey with Tourettes is to my own. I’m really interested in how she gets on, and in the eventual findings of the trial.
DBS is still something I wouldn’t consider for myself in the immediate future, but if my tics change or the research and technology moves on it might be something I’d be willing to investigate. Georgie’s description of the calm she felt was one of the things I found most appealing and I’ve got to admit it intrigued and excited me.
Thanks once again to Georgie for talking so openly with me. I’m certainly looking forward to interviewing her again after the trial’s over.