In The Dark

I have decided (and informed the DBS team) that at the end of the trial I do not want to know whether I was on or off during either period.  This may change at a later date, but for the moment I would rather just stay in the dark.

It may seem a little strange, but I’d rather have obsessions wondering if the changes/improvements have been placebo or not than find out for definite that any changes were in my head and risk the OCD making the symptoms artificially worse.

Probably doesn’t make sense to anybody else – this post won’t be released for another month or two anyway!

My Tourette’s Survival Kit

I have been posting a lot of darker, more unhappy stuff recently – I’ve been having a bit of a tough time with some stuff!  I definitely feel like this blog needs a little bit of positive!

So in light of this I figured a post detailing some of the stuff that helps me get by and be more independent might help brighten things up – so without further ado, roll on the list of Al’s “PPE“!

My Ribcap helmet

Top of the list is my Ribcap helmet – I actually own three of these (my original one is on permanent loan to my best mate as it took a lot of abuse during the worst of my recent bad patch!).  This is the thing that I usually get asked if I have by everybody before I do anything – from transferring from my chair outdoors to going to the toilet in public places! (It’s OK at home, there’s nothing behind me to bang my head on!)  It’s flexible and quite light – and although the straps give away the fact that it isn’t just a hat it feels a lot less embarrassing than wearing a more obvious helmet (see my red one below).  Also considerably less embarrassing than knocking myself out in a public toilet. 😛

My “granny alarm” and wheelchair gloves

Next up it’s my wheelchair gloves and the spectacular granny bling!  So far I’ve been buying cheaper gloves like these – the amount that I tic and hit out at walls, shred them on my wheels and generally destroy them through abuse it seems pointless to buy expensive ones.  These current ones are pair number three, let’s see how long they last!  The white bracelet with the red button is an emergency call alarm, I have to wear one of these while at home in case I have an accident.  It has occurred to me on more than one occasion that most of the accidents I could have would probably result in me being knocked out or otherwise unable to hit the button – for example when I arched backward and pulled a spectacular back-bend over the side of the bath the other day – but I guess it’s comforting and a good last resort to call for help!

Stops me from putting holes in the wall – or my head.

This is my bath cushion.  It isn’t actually intended to be used the way I do – it is actually designed to be sat on.  It’s a bit hit and miss making it work this way as it is secured to the bath by sucker pads and will often try to float (damn you physics!) or will just flop off of the wall because there are only two sucker pads on the top part!  This has not only lessened the extent of my bathing-related head injuries it has also prevented me banging a big head shaped hole in the bathroom wall when I slam backwards.  Still haven’t come up with a solution for the inordinate amount of water ejected from the bath when those tics happen though…

I hate this thing. Seriously.

This monstrosity is my travel bathing/showering helmet.  The bath cushion has stopped me having to use this at home now thankfully!  I absolutely hate it!  This was issued to me during my stay in the Neuro ward a year ago.  The Ribcap has saved me from having to wear this in public (apart from immediately after my discharge from hospital!) – I would feel so self conscious!  It also doesn’t provide a huge amount of protection to the top of my head so we used to have to stuff a tshirt into the top of it (even while I was in hospital!) – but it was the best that they could do at the time and I wasn’t about to complain!

Yeah, that’s right… It says BAD BOY.

I rarely use these pads now.  I found them invaluable when I had to crawl (before the wheelchair arrived) and also to protect my knees when I was still trying to do my pride thing and keep standing up.  Being told that if I continued with that course of action I would need knee replacements put that to bed – but they are still very useful to keep around just in case!  There are still some situations when I have to crawl places or where I might damage my knees!  Also they say BAD BOY – that’s gotta be worth some cool points!

Assorted gel packs

This pile of assorted spares are the pads that keep me from getting too bruised by my wheelchair during attacks.  Unfortunately at the moment I am waiting for some replacements for the push bars on my wheelchair – they tend to take the brunt of the punishment with all of the slamming back – currently waiting on replacement bars as well – they finally bent out of shape!  So far I’ve burst six of these gel packs, but there isn’t another option – and it was kinda funny seeing my best mate get the gel from inside all over his hand when the first set burst.  Either that or I just have an evil sense of humour?  Not sure on that one!

And that concludes my stunning Tourette’s survival kit… I didn’t include the wheelchair in this list because it doesn’t feel like safety equipment.  If anything the wheelchair probably needs protection from me!  In the six months or so that I’ve had this chair I’ve needed more than five service/repair visits and my kill count is:  Two footplate fittings, two tyres, six gel packs, most of the grip tape from the footplate and the two push bars from the back.

Here’s to hoping my terrible humour brightened the blog up a bit today 🙂