As a girl who grew up in the 1980’s, looking to 2020 and beyond seemed like science-fiction. Back then, I imagined being able to swipe a screen and have it automatically perform functions or use a watch to communicate. This was far from the clunky pc’s we worked with in computer class which used floppy disks and dos prompts and spit out chunky-looking words that we designed for banners and cards. What a different world we live in now…. My 10 year old can print high definition pictures of his Christmas wishlist from his iPad. Cellphone technology has reached epic proportions and even watches to do more than a computer used to be capable of. I have never been a techy person but as a person with no speach and little leg or arm functionality, technological advances have literally saved me from utter helplessness and kept me connected with the world. 

Thankfully, I have a network that has also allowed me to get the help I need. None of us realize how interconnected we are or how much we truly need others in our lives. At least I didn’t. From the helpful YouTube videos people post, to insurance, to special grants, to generous friends and loved ones, and especially my dear husband, who’s tireless efforts have been lifesaving for me, to tech companies, to many other things, my life and comfort are dependent on others. It more than humbles me to be so helpless and know I hang by the threads of interconnectedness, especially because I used to be so fiercely independent.

To paint the picture, imagine having no way to get dressed without assistance and no choice in what you wear because you can’t communicate. Compound that by every task or decision or need you have for a whole day or week or year and you get what I would face every minute. Were it not for technology and the care of people and infrastructure like insurance, I would be in horrible position.

Home automation has become linked to my emotional and physical wellbeing, providing at least limited autonomy and freedom. I use eye gaze technology on a specially equipped iPad to speak by typing with my eyes. It’s tedious but allows me to communicate verbally and by email and text and tty calls. I can also surf the web, write blogs, listen to music, and watch YouTube like a normal person, all with my eyes. Now add home automation to the equation and I have an even more transformative experience. I can now turn lights on and off, turn up the thermostat, or watch tv, all via the eye gaze technology on my iPad. Opening doors, “talking” on the phone, using a bidet, starting the oven, opening blinds and other things are also possible. 

Technology truly powers my world. It’s a love hate relationship …I have never liked sitting in front of a screen. That is why I chose horticulture as a profession. I’d much rather have my hands in the dirt, with a windswept look, sun bleached hair, and toned body than sit in a chair typing all day. Well, things have changed and I now do just that. Gratefully, I learned to spell. I have many things that can only be done by another person, such as scratch my nose, but the things I can do for myself take the load off my caregivers and make me less helpless and annoyed by life. (Believe me, my emotional health is astronomically better because I can do some things for myself).

Unfortunately, this technology costs money and takes expertise to set up. Through insurance, I could afford the special iPad. Through people and organizations’ generosity, I could afford the other components for my home automation system. Through YouTube and forums and other techie people, my husband could learn what worked and how to install a functional system that would be user friendly for me. Not everyone has the “luxuries” I have. The good news is that in our country, people have been advocating for people with ALS.

Team Gleason is one such organization that helps people get tech gear. They have benefited so many people and helped make the world a better place.

Groups like Matt’s Place Foundation are making videos about home automation options that are very helpful. Check out their “Hope and Housing “ series on YouTube. There are grants through various organizations to help people get what they need. If you are starting on the path of ALS, it’s important to find all the resources you can and get plugged into as much of a support network as possible and do the work on the front end to make your home accessible and automated. You will be so grateful you did.