ALS with Anna Vol. 12

I had anxiety a little before I got ALS. As my ALS progressed so did my anxiety. Having ALS to me is like being stuck in my own body and it’s broken down. Imagine the panic you would have being tired down, you can’t scream for help. When you try to talk no one understand anything you are saying. Sounds like a party right? Naw, more like a nightmare you had one night. That’s what ALS can feel like sometimes. You can’t move, can’t talk so what do you do? How do you keep from going crazy? I’m glad you asked. Follow me I’ll teach you something. I’ve been told I’m kinda good at that. IYKYK.

Well that is how I feel when I’m left alone and don’t have access to my eye gaze, also known as my Tobii. Tobii Dynavox. The name Tobii Dynavox is the brand name. It is essentially a computer or tablet that runs on Windows 10 that I control completely with my eyes. This technology has given me so much of life and independence back. I can do pretty much anything on my Tobii that you can do on a computer. 

Now how does it help my anxiety you ask? It’s just a computer. Hold up swole up! You greatly underestimate the power of this wonderful piece of technology. Now some of you would be lost without your phone for a day. I was one of those people. BUT Tobii has allowed me to stay in touch with family, friends, and fellow ALS communities. It allows me to have conversations with my children every day. I’m still mom and you have to listen to me. I can text and make phone calls. But wait Anna you can’t talk anymore. Yes, but Tobii talks for me. I can type what I want to say or I have pre-typed out messages I can use. Let’s just say something happens and I’m home alone or I can not get Jason to respond to me. I can call anyone who is saved in my phone or a number I have memorized, and ask for help. God forbid, something awful happens. I could call 911 on my phone using Tobii. I already have a prerecorded message that tells them my condition, name, and address.

Alexa to the rescue! Yes, Alexa and Tobii are friends. They help me out a lot. When it’s a school day, I use Alexa and Tobii to wake Dalton up. He has Alexa in his room and I use Tobii to talk to Alexa. I make announcements telling Dalton to wake up. We also have one in the living room. If I’m in bed I can make an announcement that I need something. We have Alexa light bulbs, switches, tv’s. I’m hoping to get a thermostat. I have a door lock, door camera, and outside cameras I just need to get them installed.

We also use baby monitors too. I like to have back up plans because of my anxiety. If I can’t get a hold of someone when I’m in bed I panic. It turns into something that feels like that nightmare, I mentioned earlier, of being tied down/stuck and can’t call out for help. Your mind starts playing dirty tricks on you. I start to panic and think how long before someone hears me or comes to check on me. When in reality Jason is just in the bathroom or walked to the car for something. This mostly happens when I wake up from a nap and I don’t know exactly what is going on. I also panic when I get hot. It’s like being stuck in a hot box. Unfortunately, the more I panic the hotter I get.

Alexa and Tobii also turn lights on and off for me. Once I get it installed I will be able to lock, unlock, and see who is at the door. I also want to get that thermostat for the house as well. I get hot flashes and being able to turn the AC on or off would be great. Maybe Santa got my wish list. Lol.

 Alexa and Tobii save the the day:

Jason has sleep apnea so if he falls asleep in his chair sometimes. Well I’m in the bedroom I can usually wake him up by calling out using Tobii and the baby monitors. If that doesn’t work I have what I call my panic button that usually gets him right up because he knows that sounds means something is seriously wrong. I can even still use my voice some, and Jason is pretty tuned to my voice. If resort to yelling the train has ran off the tracts, crashed and burned.

However, taking care of me and our three wonderful, but rowdy boys is very tiring. He NEVER complains! One night he did fall asleep in the living room and I couldn’t wake him up and I couldn’t get Alexa to work either. I tried to get Alexa to call for Dalton and for whatever reason it didn’t work. I am in full blown panic mode. It’s the middle of the night. I’m having a hot flash because I’m panicking. I calm enough to think what can I do. I used my Tobii Phone app to call my Aunt Lisa to come over. I was in full panic mode. Once I knew she and her husband were on the way I calmed down and was able to get Alexa to work and got Dalton awake. He woke Jason up and all was well again. My Aunt and uncle still rode over just to be sure. Jason felt so bad and had major guilt, but he is doing all he can do. Needless to say he doesn’t stay up anymore. When I go to bed he does too. If it was not for Tobii I would have been stuck until morning when everyone woke up. I can’t imagine.

I don’t go anywhere without Tobii or I have panic attacks. I feel helpless without it. with my resent trips to ER it has been absolutely vital in me being able to advocate for myself. It is the only way I can communicate with anyone who comes and sees me. It makes communication slow, but I can still communicate. Jason and I can communicate with simple cues and he understands a lot of my common requests or needs. HOWEVER,. Even Jason has difficulty understanding me, especially in the afternoon. When I’m tired my voice is unintelligible. There are a few others who can understand me: my caretaker Gidget, My Daddy, his fiancée, Charlotte, and my Aunt Lisa are pretty good at understanding most of what I say, if I’m having a good day. 

I use Tobii to do this blog. It is how I get on Facebook, place Walmart delivery or pick up, Amazon, shop, bank, pay bills, and communicate with my doctors. Tobii gave me some of my freedom back. Tobii is literally my hands and voice. I can’t imagine my quality of life without it. Tobii is definitely my safety blanket. 

I plan on posting a video on how Tobii works and how I use it . however  I created this blog months ago but feel like Tobii is such an essential part of my life I needed to share this with y’all and the video later. We have so much going on the video keeps getting pushed to the back burner.

For now, here is their website. https://us.tobiidynavox.com/ This company offers such awesome assistive technology. This is the exact model I have https://us.tobiidynavox.com/pages/td-i-series. I also have software that allows me to drive my power chair with my eyes using Tobii. The software is called iDrive. Technology is amazing. 

ALS with Anna

~He has a plan and I have a purpose~

P.S. If I could do it over again I would start recording my voice immediately. My biggest regret. Ask your ALS clinic about it as soon as possible. Also get your Tobii before you need it and play with it to get use to it. If you can find someone who has one it would be great if they could help you navigate how to work it. From my experience someone who uses it can help you a lot more than someone who is a representative of them. If you are tech savvy you will have no problem. It’s basically a computer you control with your eyes. 

As always I’m open for questions. I would love to help if I can.