Changes!

It has been an extremely long time since I actually updated this blog – I feel like I left it at a bit of a loose end.  It’s been a bloody complicated year or so, filled with a lot of major changes to my life, treatment and to be honest – quite a rollercoaster ride!

One of the reasons that I stopped posting for a while was that my eating disorder got worse again – badly enough to require treatment which is still ongoing.  I don’t want to go in to much detail on this because, unlike almost every aspect of my health, I am not very comfortable being open about it.  It was lurking under the surface for some time and I managed to keep it secret from most of my family and friends for years.  However, one of the changes in my life has really spurred me on to get it sorted and with the exception of a couple of slip ups I have been improving for a few months now (I will add some more detail about the news a little later in the post because it is big news!).

The DBS has had some positive effects on my Tourette’s – at times it has helped a lot more than I was expecting but so far it has not been quite as effective as I had hoped.  It has at least stablised my symptoms and seems to have stopped them from getting worse than before, but I am still having to use the wheelchair the vast majority of the time and although there has been a slight change in my symptoms, overall they remain fairly severe.  I cannot walk or stand unaided/unsupervised because of the falling/arching backward and still require help to do basic things, such as handling sharps or hot objects.  However – there is still a long way to go with regards to optimising the settings of the implant.  The DBS team has been incredibly helpful and supportive through all of this!  As of typing this I am at just over 4v on four of eight contacts and had to have a replacement battery slightly sooner than originally expected.  The battery is outputting a total of ~16v twenty-four-seven though, so the replacement of the original unit wasn’t entirely surprising and only around six months to a year off of the estimate.  The timing could not have been better for the replacement, either, because I found out that I am going to be a father!  The new one is wirelessly rechargeable, really appealing to my inner nerd – although it does mean that I have to strap a charging device to my chest after my evening meds and sit for anything up to an hour or more to keep it charged every couple of days!

That’s the big news, back there.  That’s right, I totally stealthed it in there!  I am going to be a dad!  Total shock!  We found out on Valentine’s day, of all days.  Between then and now I have been focusing all of my attention on getting my ED stable and trying to work with the DBS doctors to optimise my settings, recovering from battery replacement and get the best improvement possible.

I am really, really hoping that with a combination of changes to the DBS settings and medication, alongside my psychological therapies will help to not only stabilise the symptoms but achieve a long term and meaningful reduction and allow me to go back to living relatively normal life, not only for me – but for Holly and our daughter (who is due in October!).

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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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