Locked-in Syndrome

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In January 2004 My wheelchair finally arrived. It is a "Quickie 55s" made by Sunrise Medical (www.sunrisemedical.com). The "s" variant means it is faster and according to English law (it is made in England) it has to have a full set of lights. All the functions of the wheelchair are controlled by the joystick that I control with my chin and a button that I can reach with my head. At first it was going to be
a puff/suck controller, but I cannot control my breathing, so we (me and the physiotherapists) went for chin-control. As you can imagine this control method is quite difficult, especially when you remember that I have no trunk control. If the wheelchair rocks (like on a pothole) my body rocks with it and since my head rocks with my body I involontarily move the joystick sideways, which makes the wheelchair rock even more. At this point the only way to stop this rocking motion is to stop completely the wheelchair by letting go the joystick and letting everything settle.

One of the first things I did was to change the bracket holding the controls. This was necessary as the original bracket was too low and the rod holding the controls was hitting my shoulder. The new bracket was made by a friend who owns an engineering works (George Mallia who owns Kamoy Engineering). The new bracket is about 65mm longer.

Then it was fitting a 4-point racing-type harness to the chair to keep me as rigidly as possible in the seat. For this I ordered a custom-made harness from England (from www.willans.com) and drew a plate to hold the belt on the chair's back, that was made by the friend who owns an engineering works. The belt was not a total success - for it to work really well, one would have to tighten it a lot - which would hurt me eventually.

Then another problem cropped up : the rod holding the controls is quite long (about 50cm) and this is held on the bracket by a single bolt. Due to the lever effect of the rod, the bolt (that has a plastic handle) has to be REALLY tight otherwise the rod goes down even under it's own weight. A new bracket with a stopper was required, so after thinking about it, I had to explain what I wanted to Odette. After a misunderstanding the bracket was eventually made by the usual friend who owns the engineering works.This time the idea was a complete success - the joystick no longer goes down under it's own weight or as soon as some pressure is put on it.

Another addition was a little black box that has two functions : it has circuitry to allow me to use my laser, taking power from the wheelchair's batteries. The box also contains circuitry to operate a horn - I don't need the horn for when I am driving around.......I need it to get people's attention. Since I can't talk, often I am inches away from someone....yet I cannot get the person's attention. Another trick the box does is to keep the laser on since the pushbuttons are momentary on type - when the button is released, the laser would switch off. With the circuitry in the box, pressing once the button will switch on the laser and pressing it again will switch it off. Obviously a similar circuit is not used for the horn - the box only holds a relay to handle the current that the horn draws. The pushbuttons are mounted on a rod (like what I already have, but on my left) and are operated with my head. As a final touch the horn was stuffed with cotton wool because it was far too loud.

Normally I use a pair of sunglasses without lenses to mount the laser. I use it a lot when operating my computer and the laser is mounted on the right leg of the specs. On the wheelchair this arrangament is no good because the control rod is in the way and also if I want to wear sunglasses, I cannot. The solution is a piece of velcro on the laser and a matching piece on a hat or a headband. This way my face is clear and I can wear normal sunglasses. Finally many thanks to Adrian Rizzo, his brother Alex and Michael Bonello who made and connected the "black box". With this the back of my wheelchair was getting more and more cluttered with wires and gadgets.

In March 2006 I got a "Pressure Releiving Cushion" for my wheelchair. This works on exactly the same principle as my materass : the cushion itself is divided into many sections that are inflated and deflated by a system of valves and a pump in a small pack. The cushion was purchased from EASE Seating Systems and although pricey, it is excellent. When sitting on it one simply forgets he/she is sitting - it feels as if I am floating on air. I am not aware I am sitting which means that I am feeling absolutely no discomfort......which means that it is excellent.

At last in April 2006 the extra buttons have been fitted to the wheelchair. These two extra buttons (white and pink) are for switching on my laser and to sound a horn. To mount the buttons I made a bracket and rod similar to the one holding the wheelchair's controls and mounted it on my left. Originally I was going to order the parts from the manufacturer of the wheelchair but the prices quoted for the parts I needed was ridiculously high so I sourced the parts myself.

In September 2007 I mounted a PC on my wheelchair. The mount itself was drawn (by me - took me ages using MS paint) and a friend made it for me. The computer itself is a Tablet PC....a computer without a keyboard but with a touch-sensitive screen and it has it`s own pen to use as a mouse or to "write" directly on the screen.

In my case I use the SmartNAV as I use on my laptop to move the mouse and an on-screen keyboard ( Click N` Type) for text input. For the SmartNAV to work I have to have a reflective dot on my face. When using the laptop I have pair of lensless glasses where the dot is stuck. I could use the same system on the wheelchair but I prefer to keep my face clear in case I want to wear sunglasses. On the wheelchair I wear a headband that holds my laser so it was the obvious place but since the headband is made of cloth, the self-adhesive dot will not stick on it.

A small plastic disk was sown onto the headband and the dot sticks on it. The Tablet PC itself is a RTAB912-T01 which I bought on eBay...it`s an Intel Centrino, not exactly cutting edge but it will do. One thing for sure : I will not even try to run Vista on it.......

Since the Tablet has wireless Networking built-in, I changed my setup and included a wireless acess point to have Internet acess on Tablet while I am on the wheelchair (naturally I have to be in wireless range). The Tablet also has a PCMCIA slot in which I have a special card with a SIM-Card that allows me to send and receive SMS anywhere there is a mobile phone signal. To complete the setup there is a 24/12VDC Converter to power the Tablet from the wheelchair`s batteries.

Also, on the network I put a Network Attached Storage (NAS) - which is a hard-disk acessible by any computer on the network. This is very useful as both computers are not on at the same time, which would make transfer of data between machines on the network difficult. With the NAS I simply put what I want to transfer on it and later acess it with the other computer. For example if I want to write a DVD, I put it on the NAS and then write it from the laptop (that has a DVD writer).

All this sounds simple and explained in a paragraph but actually doing it, or rather explaining to others what to do remembering I don`t talk, was far from easy and I am not finished yet.......

After testing it thouroughly on my laptop, I had to test the USB-UIRT on the Tablet PC on my wheelchair. It was essential to allow me to have infrared control while sitting (it is all described in the TV page).

A second USB-UIRT was purchased and it was mounted with velcro on the top edge of the Tablet PC and the IRCommand2 software was installed. Important that the software license does not allow you to use the software on more than one computer - you have to purchase a license per computer. Now the whole lot is together and it works beautifully.

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