I use a Tobii I-series I-15 Alternative and Augmentative Communication (AAC) device to communicate 1-on-1 with people or in my blog. I've been using my tobii since 2013, three years and three months, to be exact.
My AAC device can be used by touch or eyegaze, but I've always used the eyegaze feature since my hands went kaput back in 2012. Tobii is my main tool for communication since most people cannot understand my speech impediment. Or more accurately, my unintelligible speech. Specifically, I use it to place phone calls to either my husband or for emergency use. I also use tobii to email, instant message on Facebook, social media, like Facebook, Twitter, PatientsLikeMe and Good Reads. I maintain a personal blog on Blogger which I devote a great deal of time to. (Of course, you already know this if you're reading this post online.) Naturally, I must use tobii to communicate in real time for one-to-one conversations or for communicating in a group situation.
Usage of these methods is severely limited by my energy and frustration tolerance as AAC device use is often problematic. Eyegaze seems lazy some days and I am unable to get it to focus on my eyes and get a good calibration. I use my iPad for video chat (Facetime) with my husband's help to speak with my daughter but he carries the conversation with me nodding, smiling, and punctuating with a word here and there. Text messaging is a thing of my past, as is picture messaging and following links in email messages. Instagram, Pinterest, and Shutterfly are also, regrettably, in my past. Phone calls, though a miraculous ability, is rarely worth the trouble; By the time I type out what I want to say, the person I called has hung up. Real time conversation, while possible, is stilted and fraught with misunderstanding, as it is difficult, if not impossible, to keep up with the pace of natural conversation. Group participation is equally frustrating which is why I limit my participation to ALSA monthly meetings.
Prior to ALS taking away the use of my limbs, I spent hours on photography and photography-related applications; Photoshop Elements, Phoster, Shutterfly, Instagram, and a Photoblog. Now, I'm unable to access any of it. My husband being a proud luddite has a lot to do with it. When my phone gets disconnected from my tobii, I have no way to reconnect it and therefore it's useless. Like now, it's been disconnected for months. Being able to access my phone messages from my tobii would be useful as well as caller i.d. Full access to Facebook would be helpful as well. I don't have full functionality from SonoKey or Tobii Communicator. This has made people think I must be mad at them, including family members.
I am an outgoing, yet introspective, private person. I have a lot going on behind the scenes; I'm very thoughtful and legalistic. I have a strong sense of justice. I am quiet in my certainty, especially when confronted with uneducated, opinionated bullhorns. I have an affable, happy affect, quick-to-smile, actually find it difficult to suppress a smile. It's fairly easy to wound me; I care what people think. I'm a passionate person; the environment, social justice, and ableism number among the topics that get me going. ALS awareness is a mission; we need to find a cure. Government is far too unwieldy and inefficient. I'm known to spout colorful language to make a point.
Prior to ALS, I had facial expression, hand and body gesturing available to express myself, not to mention extensive linguistic ability. A well-developed sense of humor, one-liner interjections, liberal use of music references peppered my banter. This facet of my communication is virtually gone, excised from my outward personality. It takes far too much energy to compose more words than absolutely necessary at this stage of ALS.
Initially, I was under the impression that I could prerecord a particular phrase in a particular voice and looked forward to fun moments when I'd pull up Marvin the Martian saying, I'm going to dis-in-tuh-grate you! or Arnold Schwartzenegger as the Terminator threatening, I'll be back. Unfortunately, this is not possible at this point. Pity.
In general, communication with my family and close friends has diminished or dried up altogether; They are impatient and cannot sit still on a single subject so I may respond or contribute. My mother and many caregivers, assume that my lack of eye contact, signal disinterest, instead of realizing that I must maintain eye contact with "Tobiias MacMuffin" (my Tobii) in order to communicate at all. Strong emotion hinders Tobii usage, tears confuse eyegaze technology and anger prevents focus. AAC use influences my make up and wardrobe choices; it took months to find that my pink Shimmering Diamonds eyeshadow was interfering with my ability to get a good calibration.
If you were to ask me to describe a specific time when I was unable to express my personality through my AAC device, I would be hard pressed to narrow it down to a specific incident. There are too many to winnow it down. Each day presents countless frustrations as humor and incisive comments require timing and inflection. Because I'm in a nursing home situation, I must provide specific care information to myriad careworkers over three shifts. These careworkers have many patients with a variety of life-threatening ailments. Additionally, they're from a wide variety of countries; Somalia, Kenya, Ghana, Ethiopia, Russia, Ukraine, Denmark, Viet Nam, Korea, and Ireland to name a few. In short, this is a misunderstanding-rich environment.
I'm forced to modify my behavior all the time; AAC usage requires a calm, methodical approach; passion must be set aside. My husband wins every argument now that I'm reliant upon AAC. He must love it!
I think the one arena that's improved as a result of AAC use, is my ability to express myself succintly, when I must. Oh, and my increased courage to put my thoughts and opinions out there for all to see...As with my blog.
My AAC device can be used by touch or eyegaze, but I've always used the eyegaze feature since my hands went kaput back in 2012. Tobii is my main tool for communication since most people cannot understand my speech impediment. Or more accurately, my unintelligible speech. Specifically, I use it to place phone calls to either my husband or for emergency use. I also use tobii to email, instant message on Facebook, social media, like Facebook, Twitter, PatientsLikeMe and Good Reads. I maintain a personal blog on Blogger which I devote a great deal of time to. (Of course, you already know this if you're reading this post online.) Naturally, I must use tobii to communicate in real time for one-to-one conversations or for communicating in a group situation.
Usage of these methods is severely limited by my energy and frustration tolerance as AAC device use is often problematic. Eyegaze seems lazy some days and I am unable to get it to focus on my eyes and get a good calibration. I use my iPad for video chat (Facetime) with my husband's help to speak with my daughter but he carries the conversation with me nodding, smiling, and punctuating with a word here and there. Text messaging is a thing of my past, as is picture messaging and following links in email messages. Instagram, Pinterest, and Shutterfly are also, regrettably, in my past. Phone calls, though a miraculous ability, is rarely worth the trouble; By the time I type out what I want to say, the person I called has hung up. Real time conversation, while possible, is stilted and fraught with misunderstanding, as it is difficult, if not impossible, to keep up with the pace of natural conversation. Group participation is equally frustrating which is why I limit my participation to ALSA monthly meetings.
Prior to ALS taking away the use of my limbs, I spent hours on photography and photography-related applications; Photoshop Elements, Phoster, Shutterfly, Instagram, and a Photoblog. Now, I'm unable to access any of it. My husband being a proud luddite has a lot to do with it. When my phone gets disconnected from my tobii, I have no way to reconnect it and therefore it's useless. Like now, it's been disconnected for months. Being able to access my phone messages from my tobii would be useful as well as caller i.d. Full access to Facebook would be helpful as well. I don't have full functionality from SonoKey or Tobii Communicator. This has made people think I must be mad at them, including family members.
ALS isolates us, I expect my AAC device to erase that isolation, all too often it fails.While I acknowledge that these are fortunate technological times, due to the difficulties of usage of Alternative and Augmentative Communication devices, I use the phone, email, text, phone, video messaging, person-to-person and person-to-group communication, a lot less or not at all.
I am an outgoing, yet introspective, private person. I have a lot going on behind the scenes; I'm very thoughtful and legalistic. I have a strong sense of justice. I am quiet in my certainty, especially when confronted with uneducated, opinionated bullhorns. I have an affable, happy affect, quick-to-smile, actually find it difficult to suppress a smile. It's fairly easy to wound me; I care what people think. I'm a passionate person; the environment, social justice, and ableism number among the topics that get me going. ALS awareness is a mission; we need to find a cure. Government is far too unwieldy and inefficient. I'm known to spout colorful language to make a point.
Prior to ALS, I had facial expression, hand and body gesturing available to express myself, not to mention extensive linguistic ability. A well-developed sense of humor, one-liner interjections, liberal use of music references peppered my banter. This facet of my communication is virtually gone, excised from my outward personality. It takes far too much energy to compose more words than absolutely necessary at this stage of ALS.
Initially, I was under the impression that I could prerecord a particular phrase in a particular voice and looked forward to fun moments when I'd pull up Marvin the Martian saying, I'm going to dis-in-tuh-grate you! or Arnold Schwartzenegger as the Terminator threatening, I'll be back. Unfortunately, this is not possible at this point. Pity.
In general, communication with my family and close friends has diminished or dried up altogether; They are impatient and cannot sit still on a single subject so I may respond or contribute. My mother and many caregivers, assume that my lack of eye contact, signal disinterest, instead of realizing that I must maintain eye contact with "Tobiias MacMuffin" (my Tobii) in order to communicate at all. Strong emotion hinders Tobii usage, tears confuse eyegaze technology and anger prevents focus. AAC use influences my make up and wardrobe choices; it took months to find that my pink Shimmering Diamonds eyeshadow was interfering with my ability to get a good calibration.
If you were to ask me to describe a specific time when I was unable to express my personality through my AAC device, I would be hard pressed to narrow it down to a specific incident. There are too many to winnow it down. Each day presents countless frustrations as humor and incisive comments require timing and inflection. Because I'm in a nursing home situation, I must provide specific care information to myriad careworkers over three shifts. These careworkers have many patients with a variety of life-threatening ailments. Additionally, they're from a wide variety of countries; Somalia, Kenya, Ghana, Ethiopia, Russia, Ukraine, Denmark, Viet Nam, Korea, and Ireland to name a few. In short, this is a misunderstanding-rich environment.
I'm forced to modify my behavior all the time; AAC usage requires a calm, methodical approach; passion must be set aside. My husband wins every argument now that I'm reliant upon AAC. He must love it!
I think the one arena that's improved as a result of AAC use, is my ability to express myself succintly, when I must. Oh, and my increased courage to put my thoughts and opinions out there for all to see...As with my blog.
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