Devices to help a patient with ALS (ALS Technology Guide)

Translation of Jay Smith's article on how he uses various devices, devices and software, being unable to move and speak independently.



It may be useful to anyone who has the task to help people who are completely or partially paralyzed, people with motor disorders, ALS patients, cerebral palsy, cervix.



* Some fragments are omitted because they are related to health insurance and associations that are relevant exclusively in the US

ALS Technology Guide

Being sick for three years, I spent enough time researching, designing and using various things that make my life more productive. Their list, given here, does not claim to be complete, but can serve as a good help to those who are faced with the disease. I will update the page if I find out about something else. Feel free to leave your comments at the bottom of the page .

Communication

Instruments that track gaze direction (i-trackers)

It is extremely important to start working with such devices as early as possible. This is necessary for those who plan how to live during the illness. It is much easier to learn the necessary skills while your hands are still working. I can advise [computer] Microsoft Surface with [i-tracker] Tobii PC Eye Mini .



There is a version with additional features, called the Eye Mobile Plus , which contains an infrared transmitter to control various things, like a TV, a built-in loudspeaker and a microphone.



In addition to such a device, I use the simplest program for converting text into voiced speech “ Balabolka ”.



For people who are not technically savvy, the iSeries from Tobii will probably be more suitable and very easy to use.



Translator's note: There are more affordable devices that track the direction of gaze: like this.

Neuronode

For those who can not use the tracker, another option is the Neuronode from Control Bionics .

Head driven mouse

Some people prefer to use a head-operated mouse instead of an i-tracker. It can also be used as a supplement to the eye tracking system for outdoor use. In general, I-trackers do not work outdoors (in sunlight). Using a head-controlled mouse always requires some mobility of the head and neck. Here are some options that I recommend:



The first option is a camera that tracks a small point placed on your forehead or on glasses.



Another option is a device that communicates via Bluetooth. This is a great option and can be used with almost any device.



Translator's note: This device was successfully used as a mouse, controlled by the head.

Fastener

You will need hardware for your device. My Microsoft Surface is permanently attached to my chair using fasteners from Dynavox .



When I'm in bed, I use a folding wall mount. They are easy to use and easy to store. It seemed to me more suitable and more economical than a stand on the floor. Sold on Amazon.com for $ 249

* I recommend reading the reviews, there are installation tips.

Recording your voice

Once you have been diagnosed with a UAS, you should start recording your voice so that when the time comes, you can use your own voice to synthesize speech on the computer. Model Talker can be downloaded for free.

Communication without the use of technical means

I strongly recommend having in your arsenal a way to communicate for such moments when technical means are not available. We quite often use a simple form of communication, in which raising the eyebrows upwards means “yes”, and closing our eyes means “no”.



For dialogue, we use the Vocal Eyes method, invented by ALS patient Jason Becker and his father.







Translator's note: My friend began to study Morse code ahead of time and made his relatives do it. A slight turn of the neck to the left meant a point, to the right - a dash.

Sleep

Custom bed

Sleep is a struggle for ALS patients, and can be quite uncomfortable. You can usually get custom bed insurance . But I independently purchased a more suitable bed for me. She allows me to continue sharing her with my wife, and there’s plenty of room for her whole family to sit down to watch a movie. I recommend icomfort from Serta. She has a mattress with shape memory, and I recommend the softest to avoid bedsores. You'll love the split king model , which is actually two twin beds, with separate controls for each half.



Custom beds can be supplied with various extras, including remote controls, massages and remote control applications. I recommend what works on Android devices. If you have a computer with a device that tracks the direction of view, you can run a program that allows you to use Android applications, and you can control the bed with your eyes.



My bed did not have Bluetooth control, and I developed my own Arduino bed controller.

Wedge cushions

When I travel, I use wedge-shaped pillows to more conveniently position my back and legs for sitting in bed or sleeping. They are inexpensive and can be rented in most cities.

Movement

Wheelchair

I recommend getting into the wheelchair early. Falls can cause injury and increase the speed of the disease. I do not recommend scooters and portable wheelchairs, they will only delay the inevitable. Immediately, when you need a seat, I recommend taking a good motorized one. My recommendation is Quantum iLevel . This is a great manufacturer and the iLevel option allows you to lift the chair so that your eyes will be at eye level with the people around you.

Driving and body support

I combined it all into one category, because the products that I recommend are made by one company - Stealth . I do not have enough words to tell about these wonderful people and their products.



Being in a sitting position and taking the desired posture will become a real challenge during the illness. It is important to discuss with your doctor what supportive things you should use to avoid getting pressure sores and to be able to sit for a long time in comfort.

Driving

The motorized chair comes with an ordinary joystick, but after a while you will notice that it becomes harder to control. Stealth has a multitude of products from micro-joysticks to switches that allow you to accelerate and brake with your legs, knees, head, feet, etc. My hands practically do not work, but I can quite accurately move them https: // stealthproducts. com /? p = 484 "> Mushroom joystick with minimal shoulder movements.

Body support

As the disease progresses, you will need more and more support elements to be comfortable in the chair. My armrests, headrest, support for the knees and feet were upholstered especially for me .

Sitting position

Being in a sitting position is not a problem in the early stages of the disease, but can become a big problem in the future. Pain in the coccyx area can bring a lot of trouble, and you can only resist by taking the correct posture and using a pillow. I recommend Roho Hybrid Elite . She has an air pocket that can be inflated and blown at your discretion.

Headrest

The head restraint doesn’t also cause problems at first, but as the neck muscles weaken, it will be quite hard to keep your head comfortably. I use a Savant headrest that supports and can be easily customized. It also has a headband that adds stability.

Power supply devices

It is important to be able to power electricity directly in the chair, I-trackers, tablets, telephones, loudspeakers and ventilators. Most of the seats are now available with a standard USB port for power, and can also be equipped with a 12-volt car outlet. I use Richardson Products PowerTech Sigma , which powers my computer, and can also be used to power a ventilator and other devices.



I connect power to the Microsoft Surface and Tobii PC mini through one of these 12-volt adapters.



Perhaps if you are using a speech synthesis device, the internal speakers will not seem loud enough. I always have a Bose Soundlink Color Bluetooth loudspeaker on my chair, powered by a USB port in the chair.

Home automation

Home automation will give you some freedom as you lose physical abilities. You can hire someone who equips the house, but be prepared for the big expenses. Now there are many inexpensive options for those who can do something with their own hands.

Light, fans, sockets

Wemo

Wemo is a simple option for home builders. They have light switches that easily replace existing light and ventilation switches. You can also use any outlet with the Wemo outlet switch to remotely control everything that can be plugged into the outlet, including a lamp, fan, TV, radio, etc. In addition, they have a Maker device to which you can wire and control just about anything. At present, Wemo devices work only with Android and iPhone, but you can use this application to control them from Windows. It should also be noted that these devices work with Amazon Echo, which is written below.

Lighting

A great way to control the light in your home is to use the Phillips Hue lighting system. The system is very easy to install, in less than 5 minutes. There are various ways to control this system, and it can be used at any stage of the disease. It can be controlled by the standard phone hue application. The system is also compatible with Amazon Echo, which allows you to control the lighting with your voice. The system can also be controlled from almost any device using the huetro application. This is a free application that runs on any operating system except Linux. If you have Linux, you can install macros using IFTT. This, however, is not an ideal option. You will need a “bridge” for the hue system, which costs about $ 50. After that you can buy lamps for 20 dollars .

Thermostat

There are a small number of thermostats that allow you to control yourself through a phone or tablet. I recommend Ecobee. It has a web interface for management, that is, it will work with any device. It also works with Amazon Echo .

Garage Doors

Perhaps this is too much, but I was pleasantly surprised when we had a new device for opening garage doors, and I realized that I could open them with my eyes.

I have Liftmaster with MyQ , which works with Android, iPhone and web browsers. It can be controlled from anywhere, so if you forget to close the garage doors, you can do it from anywhere in the world.

Music

If you spend a lot of time indoors, like most ALS patients, you may want to listen to music in large quantities. The best sound and the simplest solution, in my opinion, is Sonos . I have speakers installed in every room, and I can control everything with my eyes. The application works with Android, iPhone, Mac and Windows.

Amazon echo

Echo is a great tool for people with disabilities. You can control the light, sockets, music, thermostats, order things online and do much more with your voice. If you, like me, cannot speak, then it still works, maybe even better, with a synthesized computer voice. Here is a short demonstration of how I manage this with my eye tracking device.

TV control

Unfortunately, there is no standard for controlling televisions due to the volatile nature of this technology. The only real standard is the infrared signals that are most likely used on your TV remote. Devices that track direction of sight, such as the iSeries from Tobii, are equipped with an infrared transmitter and an application inside their Communicator software, which can be easily configured to control a TV, DVD, set-top box. I mainly use Windows Surface, and infrared control does not work so simple. Fortunately, most of the new TVs are now smart WiFi devices that can be controlled via phone, tablet or computer. I have a LG smart TV, and I use a plugin for Google Chrome , which works as a remote for a TV.



I recommend to look in the app store on the device that you use and find something that works with your brand of TV.

Universal tool for remote control is the device Logitech Harmony . A program on iOS or android controls the hub, which, in turn, controls your devices. That is, from one application you can control your TV, cable box, Blu-ray player, sound system, etc. The hub can also be used to control smart home devices and integrates with Alexa. Very easy to set up as a universal remote control.



Hub with remote control (if someone else wants to use a real remote control).

Make your ordinary devices intelligent.

If you have a device to press or turn something on, Microbot from Prota will be a good solution. You can use them to turn on the usual old light switches or rotate the volume control of the old stereo system.

Bathroom

Bidet

It was one of the first devices we purchased, and it works wonders for your marriage, ease of care and dignity. No one likes being wiped on his ass, and even worse to the one who wipes. The price of the bidet is in the range of $ 20- $ 1000. Most simply replace your toilet seat and are easy to install. I personally would suggest you a bidet "Clean Sense" . It has a seat heater, water temperature control, drying, enema mode and multi-user settings.



When I travel, I usually take with me a bidet that does not require electricity, which can be easily connected to the toilet in the hotel’s bathroom. It is also a good choice for a second bathroom.

Shower chair

Chairs for taking a shower are available in various shapes and sizes. I recommend those who have a headrest and the ability to tilt. I do not like chairs with built-in toilet, they are uncomfortable. I recommend something like this .

Urinal

Getting out of bed to pee can be problematic for a number of reasons. Portable urinal - the best way. They even have an extra tip for you, lady. Although I can not comment on its effectiveness.

Condom catheter

It’s more a medical device than a tech device, but it’s just amazing how few people know about it. Sorry lady, this is only for boys, and works according to its name. Stretch the catheter on your household, attach the tube, and tie the receiving container to the leg. With the help of such a thing, I wrote on the lawn of the White House, on the Broadway show, and flying across the Pacific Ocean, without parting from the comfort of my own chair.

miscellanea

Shopping

The fact that you cannot walk, talk and move does not mean that you are free from household duties! Amazon is the dream of a disabled person. You can buy things for home, food, read books, listen to music, watch movies. When my wife had to go to work again because of my illness, I took over the purchase of the products. I use Instacart , which works with the nearest grocery stores and allows you to shop online and then deliver them to your door.

Cold feet

Cold feet are usually associated with poor blood circulation, and you will eventually feel this because of a lack of movement. Although lifting and a set of movement exercises are definitely the best solution, heated slippers can still provide relief. Although they look ridiculous, they work really well and can be powered by USB.

Feeding tube holder

I use the gravitational-drip method of enteral nutrition, this means that someone must stand next to me and pour food into the syringe. This is a lengthy procedure, and usually quite boring for someone who feeds. “Buckwheat” is a feeding tube holder that can be placed between your knees or on the surface of the feeding table without using your hands. He was invented by the son of an ALS patient, and the proceeds go to finance the Institute of ALS Therapy Development (ALS TDI).