A general update!

I don’t know where to begin with this post so I will just let it go where it goes!

Things have gone a little awry with the Tourette’s recently – having a bit of a bad episode (albeit, reduced in severity by the DBS) and along with the head issues I mentioned in my previous post I have ended up neglecting my blog a little bit.

The hope is that this current resurgence in symptoms I am experiencing is because I am having one of the bad episodes that are natural with Tourette’s.  It does seem to be gradually fading off at the moment, but I have had a couple of incidents while out in the wheelchair that have sapped my confidence a little.  The most severe was falling out of my chair and in to the road (off of a high kerb) as a result of my back hyper-extending while going down a hill.  That resulted in me having to take an emergency trip to London to check that I hadn’t damaged the battery/control unit in my chest, as I landed on the left hand side of my body (where the implant is located).

All in all though, still a definite improvement compared to the time previous to the operation, without a shadow of a doubt!  I am keeping my fingers crossed that this is a blip in an otherwise general trend of improvement.  Every time I have a bad day, it helps me not to feel so sorry for myself by remembering how much worse things really were this time a year and a half ago – or even during my last major bad episode.  Although I am still stuck in the wheelchair, requiring help to do everyday tasks I can still see a light on the horizon – however far away it may be.  I am trying very hard not to rush to conclusions about things though as I was warned before the operation that this is in no way a cure, and best case would offer me a considerable reduction in symptoms.  Considering that it has only been about six months or so since the end of the trial I am impressed with both the improvements and the treatment I have been given by the DBS team – who are literally only a phone call or an email away.

A complicating factor in all of this has been the resurgence of the head-issues – which will remain un-detailed in this post – unfortunately it has become quite difficult to tell negative physical effects from this from side effects of the DBS/medication.  Even though I do frequently get “told off” for apologising by most of the people who have contact with me in a medical/care capacity, I feel bad that I am such a complicated person to treat.

One of the awesome pieces of news is that I have been given a degree of control over the stimulation!  Initially I was just given the ability to check it and switch it on/off.  The control unit (pictured below) allows me, at the time of writing this, to make minor adjustments myself (0.05v) between 3.5v and 3.7v (as far as I remember – I’m not 100% sure on what the upper limit was).  I have been told to leave it a week between adjustments – it also does seem to be slightly more productive making adjustments myself in the comfort of my own home and not in a very “artificial” medical environment.
On a slightly more comical note, I decided to actually RTFM last week and discovered (much to my surprise) that the unit actually has a backlight!

It has a backlight!

It has a backlight!

So here’s to this bad episode ending soon (hopefully) and a continued trend of general improvement in my symptoms (hopefully x2!).

If you got this far, thanks for reading my ramblings. 🙂

Apologies if this post doesn’t make a huge amount of sense, I have had to have a lot of Diazepam in the last few days and it has left me feeling a little bit odd – I will likely go back over this post and correct any general derpyness before I actually publish them publicly.  Also, reading back, please excuse my flagrant abuse of parenthesis – it is just how my mind works at the moment.  


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About unexpectedmonkeys

My name is Al, I was diagnosed with Tourette’s Syndrome in my mid teens and it has definitely not improved with time! I’ve discovered how interesting it can make life but I’ve always tried to keep a positive attitude and keep moving forwards.

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  1. Deep Brain Stimulation posts published! | Unexpected Monkeys - May 18, 2015

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