Locked-in Syndrome
Reviews
This section shall be reserved for reviews mainly written by myself but should you wish to submit a review about something please feel free to do so : forward it to me via email and I will put it on the site. Due to the (hopefully) frequent variations of this page it will NOT be available in other languages. Also, I will be reviewing all kinds of equipment and what I don`t have will be loaned by Techready (in UK) or EnableMart (USA) or ACTU (Acess to Communication Technology Unit - Malta)
The purpose of this page is twofold : to give an unbiased opinion. I stress it will be my personal opinion or the opinion of whoever writes the review, that will be worth reading before purchasing since we all know how costly Assistive Technology can be and secondly to show what is available on the market; many people are totally unaware of what is available to them. Some folk just dismiss what could be very helpful to them simply because they say "nah, that is too complicated for me". True, some things have a rather steep learning curve but that should not discourage you.......with patience and determination anything can be mastered and naturally I am here to help if I can.
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Quickie F55s Wheelchair
EASE Wheelchair Cushion
LUCY
SmartNAV
"Viacilin" Materass Overlay
Mobile Connect Card
Brainfingers Acess System
Quickie F55s Wheelchair
This wheelchair is made by Sunrise Medical. Normally it has a hand-operated joystick mounted on a small pod together with all the switches for the various functions. Since I cannot move my hands, mine is fitted with chin-control but the functions are unaffected. It is the classical layout of rear wheel drive with swivelling castors on the front....some people swear by front wheel drive - I can't say which is best because I never tried a front wheel drive. The rear driving wheels are inflatable while the swivel castors are solid. There is one drive motor per w
heel and they both have a small spring and shock absorber to soak any bumps on the road. This is where the "classical" ends : almost everything can moved under power and what is immovable can be adjusted manually. All the following can be moved (by me) : footrests, backrest, seat angle and seat height. The seat lifts so much that I can be at eye-level with whoever is talking to me. This is useful because it's good to be at eye-level plus it allows me to see things just like standing people. The movable footrests are very useful because I can move my feet occasionally - otherwise they go numb. Lowering the backrest, I can sleep in the chair.
The control setup consists of a chin-operated joystick and two switches that I can reach with my head. The red switch is to turn on the chair while the yellow switch is the mode switch. These 2 switches and the joystick are wired to a controller (Omni+) made by Penny& Giles (www.pgdt.com/) and with these I can control all the wheelchair's functions. The joystick itself has a foam ball on the stem that gives me a wide area to control it and to prevent me from hurting myself when I hit it (when I sneeze I hit it violently). The photo below shows me in the wheelchair when I just got it - I still needed to adjust it for me.
The seat lift unfortunately makes the seat itself a bit unstable due to the various linkages of the seat raise mechanism. This is a bit of a problem when I go out in a van - even a small pothole makes the seat move from side to side. This is further aggrevated by the wheelchair`s suspension : the van`s suspension goes up and down and the chair`s suspension also goes up and down, making the seat unstable. It would be good if the wheelchair`s suspension could be locked with a lever and the seat lift locked when fuly down.
The other complaint is the charger : it is a metal box 25cm per side weighing about 8kg.....if you travel it`s size and weight might cause some problems at an airport
Thirdly, the manufacturer should use locking compound on the various bolts and screws....one of the pivot bolts of the seat lift mechanism of my wheelchair came off making it very unstable. Thankfully the bolt just fell under the seat, so it was a matter of just putting it back and tightening it but if got lost it could have caused a few problems.
Overall it is an excellent wheelchair where just about everything is adjustable but, if possible, do not buy it with chin-control......there is nothing wrong with the chin-control, its just that it is difficult to use and a hand joystick is so much easier to use. If you are looking to buy an electric wheelchair, apart from searcing for one that siuts your needs, also have a look at the charger and make sure it has gel batteries (they can`t leak and they are accepted by airlines).
EASE Wheelchair Cushion
Since I am completely immobile , it is essential that I sit on a cushion that prevents sores. There are various types but by far the best ones are those that vary the pressure. Cushions begin from the very basic to orthopaedic foam, air-filled, gel-filled and variable-pressure. Mine (the one I shall describe) is of the variable-pressure type and although more expensive than a simple foam or gel cushion, it is far better.
I got my cushion from EASE Seating Systems and it is the G4 model. I chose this mod
el because it can be powered by an external 12V power source that can easily be taken from my wheelchair batteries (I also ordered from them a 24/12V converter). The cushion itself is made of an air bladder made up of many sections that are interconnected : all the even compartments are connected together and likewise all the odd ones. Then there is a power pack that contains a compressor, control circuitry and a battery. The compressor first inflates the even compartments, then after 4 minutes the even compartments are vented off in the odd comartments and finally the odd compartments are inflated by the compressor while the even ones are deflated completely. All this cycle is controlled by the circuitery in the power pack that also houses the compressor.
At first I was a bit worried about the noise of the compressor, but it is only 42db (less than ambient noise) and it runs for 16 seconds every 8 minutes - hardly a niusance. I can say the cushion is excellent...one can forget he/she is sitting down and the compressor is audible only if one is alone in a room. Unfortunately after only nine months` use the cushion began leaking and I had to send it back to the manufacturer for repair under guarantee. The repair was free but I had to send it to America......after getting a few quotes, the idea of courier was dropped because it was far too expensive. In all it took two months to repair it - not because of the manufacturer but because of the slow postal service.
LUCY
In the very early days, when I was using the on-screen keyboard, one of the problems I had was that a lot of valuable sceen space was used by the keyboard itself and I was continously moving it around the screen as it was covering something important. After a long search on Internet, finally LUCY was found. The main problem was what to search for.....after trying various keywords, I found the right one. At first we were going to make something similar to LUCY but it was quite obvious that Light-Dependent Resistors (that we were going to use) was not the way to go (too many sensitivity problems). LUCY has no such problems and has worked faultlessly in any ambient light conditions.
It works by using a small laser mounted on a pair of glasses (without lenses or the user's sight g
lasses). LUCY itself is a box about 30cm X 25cm and 3cm thick and the front face is divided into a grid of 88 squares covered by a plastic overlay. When you shine the laser on one of the squares, the character on the overlay is sent to the computer just as if you pressed a key on the keyboard. Apart from generating any character of a keyboard it has also a large number of macros which means that by selecting a couple of keys a pre-programmed group of characters will be generated........very useful for often used phrases. Together with this macro feature there are also a host of other features fully described in the user's manual elsewhere on this site.
Now I have been using LUCY since about 2004, mostly as a keyboard for my computer and even when the computer crashes, it keeps working just as a normal keyboard would allowing me to reboot using the alt-ctrl-del combination. As regards speed of use, I type about as fast as a person who has to look for each key on a normal keyboard.
Having said all this, LUCY can do another trick : using the (optional) voice module it can also talk. One writes a line of text on LUCY`s display and pressing "enter" will send the text to the voice module where it will be spoken. Thanks to some clever software the module the text is spoken. The criticism here is that the speed at which the text is spoken cannot be varied and very often it is a bit too fast and the volume can only be varied by a knob at the back of the unit (utterly useless for me).
Unfortunately the manufacturer does not have a website and probably you can get most information about it from this site. As regards purchases, most companies selling Asisstive Technology devices should stock it. I had bought mine from from here.
SmartNAV
The Smartnav is a clever little gadget that sits on top of your monitor and converts your head movement into mouse movement. You can read all about it on their website. In my case the only part of my body that I can move is my head, so it is perfect for me. I remember saying to myself when I first saw their website that this seems too good to be true - especially at that price !!
It works by illuminating my face with infra-red light (which is completely invisible and does not interact with any of my equipment). Then it reflects off a small reflective self-adhesive dot 
(in my case stuck on an old pair of sunglasses without lenses) and is picked up by a small camera in the unit itself. Internal circuitery then converts this signal to mouse movement. The actual mouse still remains active and moving it will override the Smartnav momentarily or pressing F9 will permanently disable it.
I have been using it since 2002 and has worked faultlessly. Only recently (early 2007) my unit has finally given up and I bought the newer SmartNAV3. Unfortunately the basic model has now been discontinued (apparently they don`t have many requests for it) and the manufacturer is concentrating on the other models (which are also more expensive) that have a socket for fitting external switches to provide mouse button clicks (I use dwell clicking - Point N` Click). Since I was looking for the basic model (and postage from USA was extremely expensive) I looked for a supplier in UK and found one : Techready . In fact I ended up buying two as I needed the other one for my Tablet PC on my wheelchair. With this configuration I can do practically anything on the computer - this website was all done by me with this setup.
This application (Tabet PC on wheelchair) highlited a problem : although I have used the SmartNAV in most light situations, it was always indoors and it did not work outdoors. I didn`t expect it to work in bright sunlight where even the lcd display of my Tablet PC is illegible, but it didn`t work even in the shade. I contacted the manufacturer and they confirmed problems outdoors, so if you intend to use it outdoors this is not for you.
Product Page : USA or UK
"Viacilin" Materass Overlay
Being totally immobile, I am prone to getting pressure sores known as bedsores. To avoid getting them, I would have to be turned often or be on a pressure-reducing materass or overlay. An overlay simply is placed on your standard materass and is held in place by a couple of straps.
The overlay has a small control box that hangs from the foot of the bed that contains all 
the control circuits, valves and compressor. The compressor runs very quietly and can be barely heard in the stilness of the night and is inaudible during the day. It works exactly like the EASE Wheelchair Cushion described elsewhere - inflation and deflation of various sections along it's length. My materass is labelled Pegasus but is in fact made by Arjo (as far as I know).
You may say that there isn`t much else to say about it.....actually there is : due to an administrative problem I had to change materass for a few days (belive it or not mine is hired) so a couple of replacements were tried. Immediately there was a problem we never expected - and if you are in the process of buying one, here are some points to watch out for :
1) The first overlay I tried had a major problem - the overlay`s nylon cover was very slippery....turning me in bed was very difficult and unsafe (I almost fell a couple of times) furthermore if I coughed slightly I slid down in bed. This is a problem that one does not think about but it is a very serious problem.
2) The second overlay was not working properly and the only way to make it inflate properly was by switching off the alternate function.
Apart from the fact that the second overlay was not working properly, they both have a problem : the overlay I had consisted of two air tubes running lenghtwise along the overlay edges about 5 inches in diameter. Between these tubes there are many other smaller tubes running at 90 degrees to the tubes on the sides and connected alternatively to the control box. By inflating and deflating these sets of tubes, the alternating function is obtained. Note that the side tubes do not deflate but remain inflated - in fact they have a separate feed from the compressor. All pressure-releif materasses work like this but not all have the two tubes on the sides....many consist of only cross-tubes. These tubes serve a very important purpose : when I am turned in bed, these side tubes tend to keep me on the bed as a sort of "bumper". Obviously when the overlay consists only of tubes across the materass, turning me can be dangerous. Add to it a slippery nylon cover and it becomes VERY dangerous. Thankfully I am now back on my previous overlay but my story highlits two problems to keep in mind if you are shopping for an overlay.
Mobile Connect Card
This is a small credit-card sized PCMCIA card with a place where to put your mobile phone`s SIM card. Once plugged in your computer (obviously it must have a PCMCIA slot) you can send and receive SMS. The card is badged Vodafone but it is a "Globetrotter" card made by a company named Option. I bought the card because I mounted a computer on my wheelchair and although most mobile phone operators usually offer Internet based service, I might not be in wireless Internet range. With this card I can send and receive SMS anywhere there is a mobile phone signal and if I really have to, I can check my email.
It is a tri-band card (not G3) and works in most countries (including USA) and with an
y mobile phone operator (not only Vodafone) - in fact I use mine on a non-Vodafone network without problems. Naturally you don`t have to have a computer mounted on a wheelchair - I used it for many months on my laptop that I use while in bed. Now I use the card on my wheelchair and an Internet-based service on my laptop while in bed. I would like to use a card also while in bed (because it is better than the web portal) but my mobile phone operator told me that they cannot supply another SIM card with my number.
It is possible to achieve the same result with siutable software, bluetooth phone and a USB bluetooth dongle. With this setup and speech software you can make voice calls too. Naturally this bluetooth setup is much more complicated (and expensive).
I had bought the card as part of a lot of 10 cards, so if you are interested I have 8 of them for sale. Every card is supplied with a CD containing the software, manual and an installation guide. If you are interested, contact me.
Brainfingers Acess System
The Brainfinger Access System consists of a headband holding three electrodes and a small box that contains all the circuitry to filter, amplify and interface the signal picked up by the headband electrodes. The signal is then sent to your computer via a serial lead and in my case via an adapter to a USB port. Please note that not all serial to USB adapters are created equal - 
some might not work. In fact when I connected mine, it didn't work! It turned out that it was using COM8 and the Brainfinger Access software was not looking at that comport. It is quite easy to map it to another port and I chose COM2, which had the internal modem assigned to it which I never use. The manufacturer informed me that they would be selling a USB version in August, thus eliminating any comport/USB problems.
The signal is then divided into 11 channels or "Brainfingers" (as the manufacturer calls them). The first 3 are controlled by left/right eye glance, the next 7 are controlled directly by brain activity, while the last (B11) is controlled by the jaw muscle - which is by far the easiest to master.
My Brainfinger Access system is set up to provide left and right clicks and drag functions - all this is done depending on how I tighten my jaw. To further help me sounds are assigned to each function providing me with audio feedback of when my jaw selects a function. The other signals (B1 - B10) can be mapped to normal mouse movement making the Brainfinger system useful for people who have no way to move the cursor.
For it to work properly I set Windows to work using single click - which is done from Start>Control Panel>Folder Options. Now I can use Windows normally and if I need a function that is not available (like double-click) I start my old dwell-clicker and it is available although this rarely happens.
After some tweaking of the timings and level of my jaw signal I can now control exactly when I click. Now to practice I use Windows Solitaire - it is strange to look at....clicking with nobody apparently controlling the clicks. Before the Brainfinger system I used a dwell-clicker, and although I used it for many years, the Brainfinger system is far better and much less stressful.
The good thing is that you can rent the system before buying it to make sure you can use it....if eventually you buy it, the rental price will be deducted from the purchase price.
Obviously there is much more to say about it so go to their Website where you can read all about it.