As a patient who has lived with the disease for over seven years I spend quite a bit of time researching, designing, and implementing various things to make my life more productive. This is by no means a complete list but should provide a good resource for those going through the disease. As I find new things I will update them here. Feel free to add your own solutions and tips in the comments section at the bottom of the page.
I can’t stress the importance of early eye tracking adoption enough. For those planning on living with the disease it’s inevitable and it’s much easier to learn when you still have use of your hands. My suggestion is hands down the Microsoft Surface with the Tobii PC Eye Mini.
There is a more robust version of the eye mini called the Eye Mobile Plus that has an infrared emitter for controlling things like a TV, a built-in speaker, and a microphone. Note that you have to use Windows Control 2 with this setup.
For text to speech with this setup I use a bare bones software called Balkabolka.
For non technical folks the iSeries from Tobii may be a more convenient option and is very simple to use.
Alternatively, for the advanced tech minded folks you can save a bundle by purchasing a Microsoft Surface https://amzn.to/2SDQ95l and use a Tobii 4c http://amzn.to/2EFCr9s. Microsoft has developed their own Windows controller into the operating system. You can find out more here http://bit.ly/2DSRxHa
You should discuss funding options with your speech therapist as it varies from state to state. Typically you can get this kind of equipment through insurance, Medicaid, Medicare, the VA, or Team Gleason.
For that are unable to use eyegaze, Neuronode by Control Bionics is another option.
Some people prefer a head mouse instead of eyegaze. It can also be used in conjunction with an eyegaze system for outdoor use, in general eyegaze doesn’t work outdoors. Using a head mouse does require some head and neck movement. Here are a few options I recommend.
The first is a camera that tracks a small dot placed on your forehead or glasses.
The other option is a Bluetooth head mouse. This is a great option and can be used with virtually every device.
You will also need mounts for your device. I have my Microsoft Surface permanently attached to my power chair using this mount.
When I am in bed at night I use a retractable wall mount for easy access and storage. I have found this to be a much more convenient and economical solution as opposed to a floor stand. You will have to remove the quick release mount off your device and connect it directly to your device. This is more of a permanent solution. Available from Amazon.com for $249
* I recommend reading the reviews for installation tips.
It’s generally a good idea to check with your local ALSA chapter to see what is available from their loan closet.
As soon as you are diagnosed you should start banking your voice so when the time comes you can use your own voice when speaking through the computer. Model Talker can be downloaded for free.
Non Technical Communication
I highly recommend having a non technical solution for communication for those times when technology is not available. We use a simple form of communication quite often with eyebrows up meaning yes, and eyes closed meaning no.
For conversational purposes we use the Vocal Eyes, invented by ALS patient Jason Becker and his dad. https://youtu.be/DL_ZMWru1lU
Sleeping is a struggle for people with ALS and can be quite uncomfortable. Typically you can get an adjustable bed through insurance or the VA. I however find that a commercially available adjustable bed to work better for me. It allows me to continue sharing a bed with my wife and provides a space for the entire family to sit together and watch a movie. I recommend the icomfort by Serta. It’s a memory foam mattress and I recommend the softest model to avoid bed sores. You will want a split king, which is essentially two twin beds pushed together giving each person their own controls. This is what I use but there are more economical options available and you can mix and match the mattress and base. I recommend going to a mattress store and trying them out. They usually offer financing too.
I personally have an iComfort mattress and I would recommend it
The adjustable bases come with various options including remotes, massage, and apps for remote control. I would recommend one that supports Android devices. If you are an eyegaze computer you can run a program that enables you to use Android apps so you can control the bed with your eyes.
If you don’t have a Bluetooth enabled bed like me, I designed my own bed controller using Arduino https://youtu.be/4xfoRbzE3fs
When I’m traveling I use wedges to position my back and legs for sitting in bed and sleeping. They are fairly inexpensive and can be rented in most cities.
This is the button is use to call for help when I am sleeping. Typically it’s placed by your head but I can kind of move one thumb and I use it to press it.
Another good solution is something called a twitch switch that can be activated by just twitching your forehead or cheek. This website also has a lot of other great solutions.
I recommend getting into a wheelchair early. Falls can lead to trauma and speed up your rate of progression. I don’t recommend scooters or portable wheelchairs, it’s only delaying the inevitable. I recommend getting a good power chair as soon as you need one. My recommendation is the Quantum iLevel. This is a great company and iLevel option allows you to raise your chair so you can be at eye level with the people around you. http://www.quantumrehab.com/ilevel-power-chairs/
Driving, and Positioning
I’ve made this a single category because the products I recommend come from the same company, Stealth. I can’t say enough about the people and their products.
Seating and position will be an ongoing challenge over the course of the disease. It is important to talk with your physical therapist to make sure you are getting proper support to ensure you don’t get sores and remain comfortable for sitting for long periods of time.
Your chair comes equipped with a basic joystick but you will find over time that it becomes harder to use as you lose mobility. Stealth has a variety of solutions from micro joysticks to switches that enable you to drive and steer with your legs, knees, heads, feet, and more.
We’ve teamed up with Evergreen Circuits and Team Gleason to enable you to control your wheelchair with your eyes.
As the disease progresses you will need ongoing support to remain comfortable in your chair. I have custom padded arm troughs, head supports, knee supports, and padded foot rests.
Seating is not a problem during the early stages of the disease but will become a big issue as things progress. Tailbone pain is a significant issue and can only be treated with proper posture and the right cushion. I recommend the Roho Hybrid Elite. It has an air pocket in the rear of the cushion that can be inflated and deflated to your comfort.
Just like seating the headrest won’t be an issue at first but as your neck muscles lose strength it will be challenging to get comfortable. I use a Savant headrest which provides support and can be customized very easily. It also has a head strap for added stability.
Technology and Power
It’s essential to have power options on your chair to power eyegaze devices, tablets, phones, speakers, and vents. Most chairs now come with a standard USB power port options, and car style 12volt jacks can be added by your wheelchair rep. I have a PowerTech Sigma from Richardson Products that powers my computer and can also be used to power a vent and other devices.
I have my Microsoft Surface and Tobii PC mini powered through a 12volt jack using one of these https://amzn.to/3dcRI1X
Additionally I power my vent with a car type charger available through your RT. While it doesn’t charge it, it keeps it powered at the current battery level. I use a y adapter to connect both my vent and Surface powered. https://amzn.to/2YowTfF
You will probably also find that if you are using a speech generating device that the internal speakers are not loud enough. There are a number of Bluetooth speakers available. I have a Bose Soundlink Color Bluetooth speaker permanently attached to my chair that is powered through the USB port from my chair http://amzn.to/2BYPTDV
Home automation gives you quite a bit of freedom as you lose your physical abilities. You can hire a company to outfit your house, but it comes with a hefty price tag. There are many low cost DIY options available out there that you can implement on your own.
Lights, Fans, Outlets
Wemo is an easy to use option for DIYers. They have light switches that can easily replace your existing light switches and fan switches. http://amzn.to/2CdXb6l You can also use any outlet with the Wemo outlet switch to remotely control anything that can be plugged into an outlet such as a lamp, fan, tv, radio, and more. http://amzn.to/2lIu1oX . Additionally they have a maker device that can be wired to control virtually anything http://amzn.to/2Ctpp0m .Currently Wemo only works with Android and iPhone, but you can use Windows application Home Remote to control it (and virtually every other smart home device) http://thehomeremote.com/ It is also worth noting that these devices work with Amazon Echo that we discuss below.
A great way to be able to control the lighting in your environment is with the Phillips Hue lighting system. This system is very easy to install with a installation time of under five minutes. There are a variety of ways to control this system and it can be used with any level of progression. It can be controlled using the standard hue phone app. The system is also compatible with Amazon Echo which allows you to control the lights with your voice. The system can also be controlled from any communication device using the app huetro. This is a free app that will work on any operating system with the exception of Linux. If you’re using Linux you can setup macros using IFTT. this is not an ideal option though. The system can be purchased from your local hardware store or online. You will require the hue bridge which will cost you around fifty dollars. After you have that, you can purchase the bulbs for twenty dollars.
There are a handful of smart thermostats available that allow you to control them with your phone or tablet. I recommend the Ecobee. It’s interface for controlling it is Web based so it will work with any device. It also works with Amazon Echo.
It might be overkill but I was pleasantly surprised when we had to get a new garage door opener and I realized I could open it with my eyes. I have the Liftmaster with MyQ that works with Android iPhone, and web browser. It can be controlled from anywhere too, so if you forgot to close the garage you can close it from anywhere in the world.
If you have to spend a lot of time indoors like many ALS patients do you might find yourself listening to a lot of music. The best sounding and easiest solution in my opinion is Sonos. I have speakers in every room and can control everything with my eyes. The app works on Android, iPhone, Mac, and Windows.
The Echo is a great tool for the disabled. You can control lights, outlets, music, thermostats, order things online and much more using just your voice. If you’re like me and can’t speak it works just as well, if not better with a computerized voice. Here’s a quick demo of me using it with my eyegaze device https://youtu.be/DlOAPk9rQlk
While I have experience with the Echo, Google Home can accomplish the same thing https://store.google.com/us/product/google_home
Controlling your TV
Unfortunately there is no standard for controlling TV because of the constantly changing nature of the technology. The only real standard is infrared or IR, which your existing remote control likely uses. Eyegaze devices like Tobii’s iSeries comes with an infrared emitter and an application within their Communicator software that makes it easy to configure it to control your TV, DVD, or cable box. I mainly use a Windows Surface and infrared control is not that straightforward. Thankfully most new Tvs are smart, WiFi enabled devices that can be controlled with your phone, tablet, or computer. I have an LG smart TV and I use a Google Chrome plug-in that acts like a remote http://bit.ly/2pvZMoz . I recommend using the app store on whatever device you use to find something that works with your brand of TV.
One universal remote option is the Logitech Harmony. It allows you to communicate from an iOS or android app to a hub which then controls your devices. So from a single app, you can control your TV, cable, Blu-ray, sound system, etc. The hub can also be used to control smart home devices and integrates with Alexa. For a universal remote, it is fairly simple to set up.
Make Your Dumb Device Smart
If you have a device that needs to be pushed or twisted Microbots by Prota is a great solution. You can use them to turn on a plain old lights switch or twist a knob on an old stereo.
This was one of the first bit of technology we purchased and will do wonders for your marriage, caretaking and dignity. No one likes having their bum wiped and it’s even worse to be the wipee. Bidets range in price from about $20-$1000. Most simply replace your existing toilet seat and are easy to install. My personal suggestion is the Clean Sense bidet. It has a seat warmer, water temperature controls, a dryer, enema setting, and presets for different users.
When I travel I usually bring along a non electric bidet that can easily be attached to a hotel room toilet . It’s also a good choice for a second bathroom.
Shower chairs come in many shapes and sizes. I recommend one with a good headrest and tilt. I don’t like the ones with built in toilets, they tend to be uncomfortable. Your local ALSA loan closet should have plenty. I recommend something like this
Getting out of your chair or bed to go pee can be problematic for a number of reasons. A portable urinal is your best bet. They even have an attachment for you ladies, though I can’t comment on its effectiveness.
This might be more medical device than technology but I can’t tell you how many people don’t know about this. Sorry ladies, it’s just for the guys and it works like it sounds. Slip the catheter over your junk, attach the tubing and strap the bag to your leg. Using one of these I’ve peed on the White House lawn, during a Broadway show, and flying over the Pacific in the comfort of my own seat. You can buy them without a prescription but you should get one so insurance covers it.
I use these clips to connect my trach tubing to my shirt, head rest, etc.
I use this in the shower to keep my trach from getting wet. Note it was designed for use without the circuit connected, so I had to cut the plastic underneath a little.
Ventec has created the revolutionary VOCSN, a ventilator, cough assist, suction machine, nebulizer, and oxygen concentrator in one portable machine. https://www.venteclife.com/
Just because you can’t walk, talk, or move doesn’t mean you get out of household duties! Amazon is a disabled person’s dream. You can buy things for the house, grocery shop, read books, listen to music, and watch movies. When my wife had to go back to work after my diagnosis I took over the grocery shopping duties. I use Instacart, which works with your local stores and lets you shop online and have it delivered to your door
Cold feet is generally associated with poor circulation and you will eventually experience it from lack of movement. While elevation and range of motion are ultimately your best solution, these heated slippers can provide some relief. Even though they look ridiculous, they work really well and can be powered by USB .
Feeding Tube Holder
I take my tube feedings by bolus, or gravity, so it involves someone standing next to me and pouring food down a syringe. It is time consuming and usually pretty boring for the feeder. The Buckwheat is a feeding tube holder that can be used in your lap or on a tabletop for hands free feeding. It was designed by an ALS patient’s son and the proceeds go to fundraising for ALS TDI.