Intervention Round Up
Yesterday a website called Living With Disability picked up on a blog entry I wrote a couple of years ago about my need for a phone wrist strap. A helpful stranger had suggested I get one after I’d inadvertently thrown my phone down the gangway on a bus. Living With Disability posted an entry about my experience and suggested a range of phone accessories that might work. I’d not seen their site before but it’s dedicated to finding useful gadgets that can help disabled people in their day-to-day life. Their post got me thinking about all the practical interventions that make my life easier and less painful.
Over the last two-and-a-half years I’ve written about many of these. They’re scattered throughout the blog so for this post I’m going to do a bit of a round up of my top Tourettes accessories.
Padding My Life
Gloves – My padded gloves have become one of my most crucial items of clothing. I left the house without them last night and it felt a bit like I’d gone out naked. These gloves prevent my hands and chest being damaged by my relentless chest-banging tic. I use ready-made boxing inner gloves and stylish bespoke gloves made with love by Poppy.
Knees – When I started dropping to my knees I frequently injured myself and got through way too many pairs of jeans in the process. Volleyball kneepads provide the best solution when I’m mobile (for comfort I slide them round my ankles when I’m sitting down). I soon know if I haven’t pulled them back up when I stand up and move about.
Arms – I’ve had biting tics since childhood and my arms often end up covered with teeth marks. Last year I found these brilliant arm guards. I don’t need them all the time but when I do they make things much less painful and distressing.
Foam Insulation Pipe – I don’t pad myself with it, but all sorts of things around me have been covered with it over the last few years to great effect. This simple foam piping’s covered everything from filing cabinet handles to the sides of a sink. Without it I’d surely have given myself a lot more head injuries.
Keeping My Head
Padded helmets – I’ll admit that I’m not always keen on wearing my rugby or boxing helmets but I accept that sometimes they’re absolutely necessary. I carry a helmet with me at all times so if I have a ‘ticcing fit’ in an dangerous spot my most vulnerable asset can be kept safe.
Baseball Caps and Trapper Hats – I used to hit my head and face much more than I do now. While this was happening dog-eared baseball caps in the summer and trapper hats in the winter helped limit the damage I was doing to myself as well as keeping me at my fashionable best.
Camping Cups – My lidded camping cups, playfully referred to by my friends as SNB’s (Special Needs Beakers), are another top intervention. Before the SNB every drink was a risky business. My arm tics meant I’d frequently tip anything I was drinking over my head or down my top. At best I’d get wet, at worst I’d get scalded.
The Humble Drinking Straw – For all the occasions when an SNB isn’t to hand drinking straws are the next best thing.
Inflatable Bath Lift – For me, having a shower had become an extreme sport. I’d throw myself haphazardly in and out of the bath and sometimes I’d get stuck in dangerous situations. At the end of last year my occupational therapist prescribed an inflatable bath lift and this has taken a lot of the danger out of staying clean.
Sporks – I carry a plastic spork (a knife, fork and spoon in a single implement) with me at all times. It’s less cumbersome than a full set of plastic cutlery and means I’ve always got a safe alternative to metal cutlery which I risk jabbing myself with.
Chewables – At times when my jaw locks with my teeth biting down on my lip I’m very glad of the chewy shapes that can be wedged in instead. It might look a bit odd having a plastic toy sticking out of my mouth but if it keeps me safe from biting my lip, I’m happy.
Wireless Doorbell – When I first moved into the castle I researched high-tech and expensive emergency alarm systems. Leftwing Idiot found a very effective and much cheaper alternative – a wireless doorbell kit. I’ve got three push-buttons that I can take from room to room which all connect to the alarm that can be moved about too. The great thing about this is I can take it all with me when I go and stay with other people as well.
Cushions – This simple but crucial intervention keeps me safe from walls, floors and other hard objects. I have loads of them to hand at home and at work. Cushions have also saved Poppy a number of times from being thumped by me during exciting films.
Sheathed Knives – I don’t use any knives except for plastic ones. However, I do need to keep some in the house for chopping things that plastic can’t manage. These beautiful sheathed knives were a present from my mum at Leftwing Idiot’s suggestion. I feel much safer having these in the house, but their effectiveness does rely on everyone remembering to put the sheaths back on!
Key Pouch – I used to keep my keys in a sock in an attempt to limit the damage I’d do when I hit my head with them – but this wasn’t always effective. These small pouches do a much better job.
Wheelchair – When my leg tics began to seriously limit my mobility, I agonised over whether using a wheelchair was a good idea or not. I’m so glad I gave it a go because it’s dramatically improved my independence and enables me to keep having an active life.
High Top Trainers – Poppy gave me a pair of lovely white and gold trainer boots that were too small for her shortly after my ankle injury last year. They make it much harder for my ankle-turning tic to upend me and they look great in the process.
Grab Rails – A classic disability aid. The castle has a handrail that runs the full length of the hall which means I’m able to get from the living room to my bedroom safely and independently. If my leg tics suddenly disappear I’ll be left with a very nice ballet barre to practice on instead.
Strategically Placed Chairs – When grab rails aren’t available you can’t beat a strategically placed chair. Great for grabbing hold of, sitting on or hauling yourself up with.
Getting to Sleep
Weighted Blanket – Sleep used to be such a battle. Things are much easier now and it’s partly due to the weighted blanket that goes on top of my duvet. It gives an extra bit of resistance, which helps me stay still enough to drop off to sleep.
Bed Surrounds – Much to Leftwing Idiot’s exasperation I refused to consider getting a padded headboard when I moved into the castle. (Don’t tell him, but this was a big mistake). He was concerned that I’d hurt myself as I thrash around at night. He was right of course, but thankfully it was easy to sort out. I now have large foam pads along my headboard and along the wall at the side of the bed.
For me, these practical, simple and sometimes obvious interventions have been very powerful. They’ve kept me safe, independent and pretty much injury-free. Each time a new tic poses a challenge, I have to find a way to deal with it to make sure it doesn’t get in the way of living the life I want to live. So far, I’m doing alright.
Please do comment on this post and add any gadgets or goodies that have helped you.
I have a mouth guard that I have cut the edges off. It gives me something to bite down hard on and muffles my loud vocal tics…. Haha there has been a few times that my head ticced and I spat it out, but its rare. 🙂
My son is 10 years old and he has motor and vocal tics. His tics are quite minor and pretty manageable and I know he disquises majority of the tics while at school or when he is with friends or relatives…. your pretty good blog about the measures you take to keep yourself safe from harm makes me understand how smart my son is. I trust him to be as smart as you are.
most of mine are similar to yours – sports armour like headguards, elbow and knee guards, mouthguards… Wrist straps on my (plastic) cutlery, basically avoid anything breakable, walking stick to help resist the leg tics. Seems to be a mix of sports gear, outdoors equipment and actual disability aids. Things like ear defenders and fidget toys can reduce the triggers of the tics. I can’t think of anything else right now, but I’m sure there’s more. Medication, if that counts…!
Brillaint to see your tips written down here. You were an amazing source of help last summer when we needed suggestions to help Dylan and we will never forget how much you helped and supported us make things that little bit easier for him. Thank you xxx