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Devices to help patients with ALS Technology Guide / SurprizingFacts


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

It can be useful to anyone who has the task of helping completely or partially paralyzed people, people with motor skills disorders, Patients with ALS, cerebral palsy, cervical spine.

* some fragments are missed, since they relate to health insurance and associations that are relevant only in the USA

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 pretend to be complete, but can serve as a good help to those who encountered the disease. I will update the page if I learn about something else. Feel free to leave your comments at the bottom of the page http://www.every90minutes.org/als-technology-guide/

Communications?

A direction tracking devices (ay-trackers)

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

https://www.tobiidynavox.com/en-US/devices/eye-gaze-devices/eyemobile-mini2/

There is a version with additional features called Eye Mobile Plus and contains an infrared transmitter for controlling different things like a TV, built-in loudspeaker and a microphone.

https://www.tobiidynavox.com/en-US/ Devices / eye-gaze-devices / eye-mobile-plus /

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

http: //www.cross -plus-a.com/balabolka.htm

For people who are not technically savvy, iSeries devices from Tobii are probably more suitable and very simple to use.
https://www.tobiidynavox.com/en-US/devices/eye-gaze-devices/i -15-with-communicator-5 /

Translator's note: There are more affordable devices that track the direction of sight: https://habrahabr.ru/post/208108/

Neuronode

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

http://www.controlbionics.com/

A mouse controlled by a head

Some people prefer to use a head-controlled mouse instead of an AI tracker. It can also be used as a supplement to the system of tracking the direction of view when used outdoors. In general, ay-trackers do not work outdoors (in sunlight). The use of a head-guided mouse always requires some mobility of the head and neck. Here are a few options that I recommend:

The first option is a camera that monitors a small dot placed on your forehead or on glasses:
http://www.orin.com/access/headmouse/

Another option is a device communicating via Bluetooth. This is a great option, and can be used with almost any device:
http://glassouse.com/#glassouse

Translator's note: Here such device was successfully used as a mouse, Controlled by the head: https://habrahabr.ru/post/213715/

Johnholding191959010] You will need a fastener for your device. My Microsoft Surface is permanently attached to my chair using Dynavox fasteners
http://www.dynavoxtech.com/products/connectit/wheelchair/

When I'm in bed, I use the folding mount to the wall. They just use it and just store it. It seemed to me more suitable and more economical than the stand on the floor. For sale on Amazon.com for $ 249
http://a.co/4awmf5y
* I recommend reading the reviews, there are installation tips.

Record your voice

Once you have been diagnosed with ALS, 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.
https://www.modeltalker.org/

Communication without the use of hardware

I strongly recommend that you have in your arsenal a way of communicating for such moments when technical means are unavailable. We often use a simple form of communication in which to raise the eyebrows up means "yes" and close the eyes means "no."

To conduct the dialogue, we use the method of Vocal Eyes, invented by the patient BAS Jason Becker (Jason Becker) and his father .

Translator's note: My friend soon began to study the Morse code and forced it to do Their relatives. A slight turn of the neck to the left signified a point, to the right – a dash.

The Dream

The Adjustable Bed

Sleep is a struggle for patients with ALS, and can be very uncomfortable. Usually you can get a customized bed on insurance . But I independently purchased a more suitable bed for me. It allows me to continue to share it with my wife, and there is enough space on it to allow the whole family to sit down and watch a movie. I recommend icomfort from Serta. She has a mattress with a shape memory, and I recommend the softest one to avoid pressure sores. You will like the "split king" model, which is actually two shifted double beds, with separate controls for each half.
https://www.serta.com/adjustable-foundations

Customizable beds can be supplied with various extras, including remote controls, massage and remote control applications. I recommend what works on Android devices. If you have a computer with a device that tracks the direction of the view, you can run a program that allows you to use applications for Android, and you can control the bed with your eyes.
http://www.bluestacks.com/#gref

My bed was not controlled via Bluetooth, and I designed my own bed controller on Arduino

Pillows in the form of wedges

When I travel, I use wedge-shaped pillows to make my back and legs more comfortable to sit in bed or sleep. They are inexpensive, and they can be rented in most cities.
http://a.co/cbuOazc

Transportation

Wheelchair

I recommend to sit in a wheelchair early. Falls can lead to injuries 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 chair, I recommend taking a good motorized. My recommendation is Quantum iLevel. This is an excellent manufacturer and the iLevel option allows you to lift the chair so that your eyes will be at the level of the eyes of the people around you.
http://www.quantumrehab.com/ilevel-power-chairs/

Driving and support for Body

I put it all together in one category, because the products I recommend are produced by one company – Stealth. I do not have enough words to tell about these wonderful people and their products.
https://stealthproducts.com/

Being in a sitting position and taking the right pose will become a real test during illness. It is important to discuss with your doctor what supporting things you should use to avoid getting pressure sores and being able to sit for a long time with comfort.
https://stealthproducts.com/?p=45&tb=pages

Driving

The motorized chair comes with a standard joystick, but after a while you'll notice that it's getting harder to manage. Stealth has a lot of products from micro joysticks to switches that allow you to accelerate and brake with the legs, knees, head, feet, etc. My hands are almost not working, but I can quite accurately move their Mushroom joystick with minimal shoulder movements.
https://stealthproducts.com/?p=484

Support for the body

As the disease progresses, you will need more and more supporting elements to be comfortable in the armchair. My armrests, headrest, support for the knees and feet were specially tailored for me.
https://stealthproducts.com/?p=26&tb=pages

Seated position

Being in a sitting position is not a problem in the early stages of the disease, but it can be a big problem later on. Pain in the coccyx region can bring a lot of trouble, and they can only be resisted by taking the right posture and using a pillow. I recommend the Roho Hybrid Elite. It has an air pocket that can be inflated and blown at your discretion.
https://permobilus.com/product/roho-hybrid-elite-single-compartment-cushion/

Headrest

The headrest at first also does not cause problems, but as the muscles of the neck weaken, it will be quite difficult to keep the head in comfort. I use the Savant headrest, which supports and can be easily tailored for myself. He also has a hand strap that adds stability.
http://www.savantheadrest.com/

Power Supply Devices

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

I connect power to Microsoft Surface And Tobii PC mini via one of these 12-volt adapters http://a.co/gRnu1mU

It is possible that if you use a speech synthesis device, the internal speakers will not seem loud enough for you. I have a Bose Soundlink Color Bluetooth loudspeaker on my couch that is powered by a USB port in the chair.
http://a.co/98ixIVa

Home Automation

Automating the house will give you some freedom as you lose your physical abilities. You can hire someone who will equip 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-producers. They have light switches that easily replace existing light switches and ventilation. Http://a.co/c6fSjAn 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. Http://a.co/eudmaFE In addition, they have a device Maker, which can be connected with wires and manage almost anything. Http://a.co/8XeTVZ3 Currently, Wemo devices work only with Android and iPhone, but you can Use this application to manage them from Windows: http://www.allware.com.mx/Software.aspx?Pr=AllWemo 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 manage this system, and it can be used at any stage of the disease. It can be controlled by the standard hue application for the phone. The system is also compatible with Amazon Echo, which allows you to control lighting with 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 other than Linux. If you have Linux, you can set macros with 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 a lamp for $ 20.
http://amzn.to/2qqvIJ1

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-based management interface, that is, it will work with any device. He also works with Amazon Echo.
https://www.ecobee.com/

Garage Doors

Perhaps this is too much, but I was pleasantly surprised when we had a new device for opening the garage doors, and I realized that I could open them with my eyes.
I have a Liftmaster with MyQ, which works with Android, iPhone and web browsers. It can be controlled from anywhere, so if you forgot to close the garage door, you can do it from anywhere in the world.
https://www.liftmaster.com/for-homes/myq-connected-home

Music

If you spend a lot of time indoors, like most patients with ALS, you may want to listen to music in large numbers. The best sound and simplest solution, in my opinion, is Sonos. I have loudspeakers in each room, and I can control everything with the eyes. The application works with Android, iPhone, Mac and Windows.
http://www.sonos.com/en-us/home

Amazon Echo

Echo is a great tool for people with disabilities. You can control light, sockets, music, thermostats, order things online and do a lot of things with the help of voice. If you, like me, can not talk, 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

http: // amzn .to / 2qgDisA

Control of the TV set

Unfortunately, there is no standard for controlling TVs because of the changing nature of this technology. The only real standard is the infrared signals that are most likely used in your TV remote. Devices that follow the direction of the view, such as the iSeries from Tobii, are equipped with an infrared transmitter and an application inside their software "Communicator", which can easily be configured to control a TV, DVD, set-top box. I mostly use Windows Surface, and infrared control does not work so easy. Fortunately, most new TVs are now smart devices with WiFi that can be controlled via a phone, tablet or computer. I have LG smart TV and I'm using a plugin for Google Chrome that works like a TV remote:
http://bit.ly/2pvZMoz.

I recommend you look in the app store on that device that you Use, and find something that works with your brand of TV.
The universal remedy for remote control is the Logitech Harmony device. The program on iOS or android manages the hub, which in turn controls your devices. That is, from one application you can manage your TV, cable box, Blu-ray player, sound system, etc. The hub can also be used to manage smart home devices and integrates with Alexa. It is very easy to set up as a universal remote control.
Hub: https://www.amazon.com/Logitech-Harmony-Control-Entertainment-Devices/dp/B00N3RFC4Q/

hab with remote control (if someone else wants to use the real remote): https : //www.amazon.com/dp/B00N3RFC4G? Psc = 1

Make your usual devices intelligent

If you have a device that you need to press on, or you need to rotate something, a good solution will be Microbots from Prota. You can use them to turn on the usual old light switches or turn the volume control of the old stereo.
https://prota.info

Bathroom

Bidet

It was one of the first devices that we purchased, and it works wonders for your marriage, the convenience of leaving and preserving dignity. No one likes it if they wipe his ass, and even worse, someone who wipes. The bidet price is within $ 20- $ 1000. Most simply replace your toilet seat and are easy to install. I personally would offer you the bidet "Clean Sense". It has a seat heater, water temperature control, drying, enema mode and multi-user settings.
http://a.co/3rFGTpZ

When I travel, I usually bring along a bidet that does not require electricity, which can easily be connected to the toilet in the bathroom of the hotel. It is also a good choice for a second bathroom.
http://a.co/9IRrn7U

A chair for taking a shower

Armchairs for showering are available in various shapes and sizes. I recommend those who have a head restraint and the ability to tilt. I do not like chairs with a built-in toilet, they are uncomfortable. I recommend something like this:
http://bit.ly/2nv03s5

Ureter

Getting out of bed to pee may be problematic for a number of reasons. A portable urine receiver is the best way out. They even have an extra headpiece for you, lady. Although I can not comment on its effectiveness.
http://a.co/bQB68hN

Condom catheter

This is more a medical device than a technological device, but it's just amazing how few people know about it. Извините леди, это только для пацанов, и работает в соответствии со своим названием. Натягиваете катетер на своё хозяйство, присоединяете трубку, и подвязываете приёмную ёмкость к ноге. С помощью такой штуки я писал на лужайке Белого Дома, на бродвейском шоу, и перелетая через Тихий океан, не расставаясь с комфортом своего собственного кресла.
http://www.vitalitymedical.com/external-catheter.html

Разное

Шоппинг

То, что вы не можете ходить, говорить и двигаться, не означает, что вы освобождены от домашних обязанностей! Amazon – это мечта инвалида. Вы можете покупать вещи для дома, продукты, читать книги, слушать музыку, смотреть фильмы. Когда моей жене снова пришлось выйти на работу из-за моей болезни, я взял на себя покупку продуктов. Я использую Instacart, который работает с ближайшими продуктовыми магазинами и позволяет вам делать покупки онлайн, а потом доставляет их до вашей двери.
https://www.instacart.com/

Холодные ноги

Холод в ногах обычно связан с плохой циркуляцией крови, и вы со временем почувствуете это из-за недостатка движения. Хотя подъём и набор двигательных упражнений — безусловно лучшее решение, тапочки с подогревом всё же могут дать облегчение. Хоть они и выглядят нелепо, работают они по-настоящему хорошо и могут питаться от USB.
http://a.co/bfsfxdB

Держатель трубки для кормления

Я использую гравитационно-капельный метод энтерального питания, это означает, что кто-то должен стоять рядом со мной и подливать пищу в шприц. Это длительная процедура, и обычно довольно скучная для того, кто кормит. «Buckwheat» — это держатель трубки для кормления, который можно расположить между ваших коленей или на поверхности стола для кормления без помощи рук. Он был придуман сыном больного БАС, и выручка поступает на финансирование института разработки терапии БАС (ALS TDI)
http://www.feedingtubeholder.com/

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