ALS… A Communication Loss

Post 67 of 84

Hello to all… I didn’t get a post in over the weekend because I also have a project I’ve been trying to give some attention to. I started it a few months after diagnosis. Believe it or not, I get a lot done from my bed doubling as an office, especially with Tony around to help.  Without him a lot of things wouldn’t get accomplished. I will be cremated, I hope after donation of brain and spinal cord tissue for ALS research, something else I need to get squared away. There will be no funeral home for me. Instead, there will be “April’s Show.” Maybe I’ll  blog more about it sometime but I can’t give away too much. It’s all for my family and most of them read my blog. 

Right now I have something on my mind that really hit me hard soon after diagnosis. Since then I go through times of it hurting and hitting me hard, like today. I really need my hands, my fingers to work. We all do of course but my son, Tyler, is deaf. We communicate by sign language. He is currently living out-of-state and we communicate by text mostly. I’m well known for my long text messages, I still send him long ones but it takes me longer. When I try to think of different ways to communicate with him later in progression, it always comes back to no, that won’t work.

Right now I can’t speak my texts because nothing I say is understood. So I swype, then go back and fix the many mistakes, I used to swype with rarely a mistake but it’s getting harder. I start getting shaky from weakness caused by holding my phone in my left hand, my good side. My fingers start getting shaky on my right from swyping. I used to use only index finger, now I alternate. The same thing with typing my blog, usually by the time I’m finished, my fingers are cramped and weak. It’s something I enjoy and feel it’s actually therapeutic for me. I really want to keep this up.  So I will.

My sign language used to flow easy. More and more, my fingers just don’t move like they used to. I guess you could say I sign with a very strong slur, and just like talking the longer I sign, the worse I slur.

I’ve decided the only way we’ll really be able to communicate when together is when I start using eye gaze technology.  He’ll have to look on the screen to see what I’m saying. Then he can sign to me. It’s just been on my mind a lot lately. This fucked up disease. I hate you, ALS. It also took my facial expressions so early. Expressions mean a lot in the deaf community.  Face expression is like tone of voice. A simple expression can turn a statement into a question, or what can be taken as anger shown as joking. Expression is important in any communication just much more so when communicating with a deaf person.

It breaks my heart but not my will! It brings back memories of when I first learned he was profoundly deaf. Before the news fully hit me, all I could think of was how I would communicate with him. I went out and bought a sign language book, Signing Exact English (SEE) and got busy learning. In the early days people would tell me I should be learning American Sign Language (ASL). That made no sense to me at the time. My son would sign English. Now, my son does primarily sign ASL, but I really don’t regret it. I really stopped regretting it when he gave me his approval, and in certain ways it actually helped him. Now I’m more of a pidgin signer which kind of bridges the two, but I still lean more toward the SEE side. Just like writing, I tend to want to sign the exact words I’m saying. We understand each other, it works well for us and that’s all that’s ever really mattered.

No matter what, communicating, especially a heart to heart discussion is something you always want the ability to do with your child. We’ve always signed away to each other.  I’m so angry that I’ve lost that already. I can still form signs, but nothing like before. Definitely not what’s needed for the easy flow of a conversation.  It’s a loss for both of us. I think I’m feeling like any parent would in any situation that poses a threat. It’s one thing to fuck with me but please just leave my child alone!

Now I realize my daughter, Amanda along wish Tasha and Steven are being affected and having something taken, me, bit by bit too. This just seems like something specific directed at Tyler. I need to start checking into the best eye gaze speech systems like Dynavox or Tobii. Even though my voice is leaving me, I really haven’t done much research about which will be best for me, or even exactly how they work. I have done quite a bit of voice banking. I’m assuming they show the words you’re creating on-screen. If not, there’s another, no that won’t work. I’ll never give up. I want to be able to fully communicate with my son. Someone can always sign to Tyler what I say when I’m using a speech device, but some conversations are private. We’ve never had to have an interpreter before and I always want it to stay that way. Just like so long ago, when I knew I would figure out how to communicate with my son, I will with ALS too.

I feel a little better, stronger writing these thoughts out. I hope it makes sense.

Until next time, take care,






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This article was written by April


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