Firstly, the name of the blog. My other half Holly suggested “Unexpected Company”, which is what she calls my Tourette’s from time to time (usually at times when she’s just been kneed somewhere sensitive while hugging or headbutted while kissing me), but that name was taken. One of my very frequent tics in the last few months has been “monkeys”, which is always a normal, respectable thing to blurt out during a sentence – although not quite as normal and respectable as meowing at people. So I decided to combine the two and make it Unexpected Monkeys – as quite often those monkeys really are unexpected!
My name is Al, I was diagnosed with Tourette’s Syndrome at around age seventeen and it has definitely not improved with time! I’ve definitely discovered how interesting it can make life but I’ve always tried to keep a positive attitude and keep moving forwards.
This last few years have been particularly bad, I’ve lost several jobs (legal loopholes do actually allow companies/organisations to get rid of disabled people, believe it or not) and my last two bad patches have been the worst in my life! At the point of writing this I am currently unable to walk, cook or wash myself – among other things – and have to rely on the support of home care workers and my lovely wife Hollie.
In 2013 I was given the opportunity to take part in a clinical trial for DBS (Deep Brain Stimulation) targeting the GPi. This involved having electrodes permanently implanted in my brain, linked via a cable to a battery pack/stimulator unit inside a pocket in my left pec muscle. This was the original reason for me keeping this blog, as a number of fellow sufferers wanted to know more about the process from a patient’s point of view. I underwent the surgery in 2014 and while the trial was a bit of a bumpy ride, and while it is incredibly hard to quantify improvements at the moment, given how bad things have been with regards to the overall severity in recent years, things are definitely beginning to improve.
I’m by no means the first person with Tourette’s to keep a blog, and I probably I won’t be the last. My hope is that somewhere in my rambling posts, if I remember to do it, will be something that will be of use to somebody else.