I was showing signs of tics just before I was 3 years of age.

When I left primary school, this is where my tics began to become rather impactful.

I had 6 months of high school education based on the disruptiveness of my condition and government funded home tuition for 3 months only, based on funding.

It took 5 years from my mother fighting to get me diagnosed to actually receiving the formal diagnosis of Tourette’s syndrome from Booth Hall children’s hospital in Manchester when I was 13 years old.

As soon as I was diagnosed, I had been put on many different antipsychotic medications which often caused worse problems than the condition itself including, but not limited to:

  • Extreme zombification
  • Painful facial spasms
  • Restless legs, arms, and body
  • Nausea
  • Dizziness
  • Emotional instability
  • Concentration and attention challenges

Despite this I wanted to ensure that I worked, as my worst nightmare would be to be an individual who couldn’t contribute to society.

I managed to hold down numerous jobs, but when I was 17, my tics became even more disruptive, leading me to go to A&E to get some form of sedation every couple of months based on torn muscles which didn’t heal due to repetitive movement.

I also struggled walking up and down stairs due to severe head movements which affected my balance, including being unable to drink out of anything other than Sippy cups.

This is when I discovered a procedure that was developed in America in the early 90s which posed a number of risks and success was by all means, not guaranteed. This was my first encounter with Deep Brain Stimulation (DBS).

To cut a long story short (roughly 6 years from my discovery of DBS), I left my family home at 4:30am, got on 2 buses, and arrived at Salford Royal Hospital at 5:45 am ready to undergo this life changing procedure.

Yes, there is always a risk with brain surgery, however, I had nothing to lose from my mindset.

I got wheeled into a room with computers wall to ceiling, a bit like something from the film Minority Report, where there were more than 10 people in white coats.

The next bit was having a cannula inserted into my arm and the anaesthetist saying he was going to put some pain killers in and then the sedative.

I remember the sedative feeling extremely cold and I got to 6 before I went off.

The next thing I remember was waking up by someone putting pressure on my sternum and then opening my eyes to the face of Mr Evans (the brain surgeon) …. who looked completely different from what he looked like early that morning, well, much more tired to say the least.

Professor Silverdale asked me how I was feeling post a setting activation to which I began to feel really cold across my chest and extremely calm. I responded with “This feels really good” and based on my tics coming to a complete stop and no pre-urge feelings.

I remember asking him where he was from based on his accent, to which I answered my own question … “South Africa”? He responded with “No, Wales”, as you could tell, it was a deep anaesthetic.

I remained in hospital for 4 days in my own private room to avoid infection where possible. On top of this, I also had the stun effect, which is a known side effect which can stop the tics and the pre-urge symptoms for up to 2 weeks post op based on shock to the brain.

Also, the DBS device cannot be turned on within the first 14 days based on brain swelling.

On the 5th day, my family picked me up and took me home where I remained with a nappy style dressing on my head, however, this by no means dampened my spirits as I could walk up and down stairs, and drink like a normal person because of the stun effect.

All in all, a fantastic experience based on a great 14-hour sleep where I didn’t wake up once, amazing staff at the hospital, and a taste of normal life, not to mention, I didn’t have a single bit of pain – not even a headache.

At the 10-day post-surgery mark, my tics slowly started to return, getting stronger hour by hour, day by day.

On the 14th day, I then got back onto the bus to Salford Royal Hospital where the programming would take place by Professor Silverdale.

Now, describing this is extremely difficult, and I doubt has ever been portrayed due to the complex feelings, however, this is by far the most alien, scary, exciting and somewhat traumatic time of my life.

I sat in a chair with what looked like a travel pillow around my neck. The pillow had an electromagnet on one side which sat on top of my device, and this was connected wirelessly to Professor Silverdale’s iPad.

Professor Silverdale then explained that he would go through various settings to see the effects.

I remember clearly the first setting I felt nothing, I felt extremely down thinking this isn’t working at all, however, I looked at the palm of my hand and it was dripping with sweat, this definitely wasn’t the right setting.

I must have gone through uncountable different variants which made me nearly be sick, pass out, feel really hot, dizzy, see flashing lights and ultimately, feel like I wasn’t safe no matter where I was – which to describe all of this, felt like I wasn’t connected to this reality and all matter wasn’t really there.

Over two hours later, Professor Silverdale asked me how I was feeling post a setting activation to which I began to feel really cold across my chest and extremely calm. I responded with “This feels really good” and based on my tics coming to a complete stop and no pre-urge feelings, Professor Silverdale said he would leave me on this for an hour and come back to see how I was doing.

After 2 minutes, I felt I was going into shock and thought I was going to pass out. I got a chair quickly and raised my legs. I then shouted for a nurse to come over and without trying to start panic, I asked for a lot of toast. To this day, I have never seen toast arrive that quick (30 seconds, 6 slices).

I completely devoured this and felt much better.

An hour later, Professor Silverdale returned to check how I was doing, I said amazing, which was an understatement.

I was then allowed to go home.

As soon as I got home, I began feeling euphoric, admiring brick walls on houses, paying attention to the small details in life and, well, feeling like the world’s most positive person.

This could be down to the effects of my settings or, down to a new life which was given to me and presented me with more opportunities than I had ever known, and to this day, I am more grateful than the day before.

Now, over 12 years since my DBS transformation, I have been back to Salford Royal Hospital three times, twice to have the voltage increased and lastly, to have a full reprogramming of my settings.

This is down to the fact that the brain can adapt to the settings, and for me, my tics started to return.

For the increase of voltage, this only took 20 minutes as an impedance test was needed to assess if the brain can handle the increase in the rate of electrons without causing damage, however, the reprogramming took an hour to find another suitable setting which I can switch back and forth from to prevent my brain from adapting to either option.

The DBS is now, and still is as effective as it always has been.