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!
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.