Natalen

[My perspective comes from personal experiences and is limited to my neurological speech issues.]

When I could speak clearly, I never imagined how complex the muscles are that affect speech. The soft palate, the tissues behind the nose, tongue, lips, cheeks, diaphragm, voice box and brain all play a role to create the sounds and inflections and timing that make up speech. Initially, my husband and I quarreled about the problem—Was it was his ears or my voice? Then I had a situation where I was blowing into an instrument and something popped behind my nose. After that I noticed air leaking from my nose when I talked that made it very uncomfortable to read stories to my kids. Soon I no longer had good breath control. Then my voice became quavery. After that, I could no longer control my inflections and I sounded monotone or worse. I could barely listen to myself! I had to take breaths in weird sequences within a sentence and words didn’t always come as quickly as I wanted them to come out. It was tiring and embarrassing to talk even though I could still usually be understood. My voice became quieter and I could not yell when I needed to, like at my son’s birthday party to get everyone’s attention or like the time my son slipped off the ski chair lift and I had to save him by lowering him down with his kiddie training straps. Someone else had to yell to get the lifty to stop the lift.

My singing voice was also affected. Previously, I had very good pitch but my ability to sing harmony or even melody lessened as my facial muscles grew weak and ineffective. (At this point, I can’t even hum without sounding like a dying cow, which is torture to someone like me.) I used to sing in front of audiences. It is an awful plight for a person with music and words inside of them to not be able to share! I have found a solution for speaking but not for singing or dramatic storytelling or showing off my bevy of accents.

My troubles with speech therapy

As someone who was diagnosed with bulbar onset ALS, initially my voice was the only thing that was an issue. I was completely healthy and strong. It was perplexing to find out that speech pathologists could only recommend ways to communicate without speaking and recommend I do voice banking. At that point, voice cloning was not a thing. They also tested my swallowing ability, for whatever that was worth. I was told exercises would not help me strengthen the muscles that were to blame for my poor diction and I was discouraged from learning sign language. When I asked about it, I was told that soon I would not have the ability to gesture with my hands, so it was not worth my time. They couldn’t offer me any hope and it was disheartening to realize that I would soon be mute.

My experience with speech professionals was frustrating on many levels. I knew what my swallowing ability was and felt annoyed by the graham cracker and applesauce barium test I had to endure when it was things like lettuce I had problems swallowing. I was offended by the multiple times they felt they had to caution me about eating when I knew I could evaluate and use caution on my own. I was told to do voice banking but not guided through the maze of unfamiliar options. I was told about only a specific brand of talking device and not given options. The talking devices weighed a ton and were geared for individuals in wheelchairs. I had no mobility issues and needed something very portable for my active lifestyle. I was not given any advice or options for a mom who was chasing after a toddler and driving a kid to school every day except a pad like an etch-a-sketch to write on. Didn’t they know toddlers can’t read? I did not appreciate the pushiness at the clinic about getting an eye gaze device, as if they were getting kickbacks on the sales, while the acute unhelpfulness for my current problem was glaring. I would have needed a personal assistant to carry and hold up the 9 pound brick of a device they were offering or run to the device every time I needed to speak.

It was very distressing that I got so little help for my only physical problem when I was diagnosed with ALS. It seemed that, to the medical community, the minute you were diagnosed, it meant you were helpless and unable to move and that you should roll over and give up. I had a life to live and a very real problem that needed solutions, which they were unprepared to help solve and would not acknowledge. Please note that the occupational and physical therapist at the same interdisciplinary clinic were very practical and helpful as I began to lose strength in my fingers but they were not involved in the speech therapy issues. Perhaps they would have been a better source of help because they actually suggested many cost effective, helpful gadgets and tools from Amazon rather than only recommending overpriced things from medical companies that insurance would cover.

I had to reach out to Team Gleason for help. They loaned me a quality microphone and referred me to a speech professional that donated time to meet with people who needed advice. It was such a relief to talk to someone who actually cared. That person gave me insight into the choices for voice banking and many ideas of things to record for use later on. I was given some very helpful advice about apps that I could download and use on my cellphone. They had to be careful not to go against the rules of what they had jurisdiction to speak about yet point me in the right direction to find the actual help I needed.

It was disheartening to realize how broken our healthcare system is, that actually helping people can get someone in trouble by telling people what can help them, while blatantly selling devices for specific companies (which I couldn’t even use) was acceptable. I was rightfully outraged by this and said as much to the speech pathologist that was assigned to me at the clinic I went to. I have never been a person who spoke loudly or in anger with people I don’t know well, but I found myself yelling and hyperventilating at the stupid, uncaring professional that I had to pay, who was of so little help. I actually told the therapist to stop coming to my interdisciplinary clinic sessions from then on since Google was more helpful to me than they were. I learned from that situation that being a specialist doesn’t mean that you actually are a valuable asset for people and if you are an asset, your hands can be tied from actually helping people. I don’t know how to change this, but I hope newly trained speech pathologists have more insight about what is available and are willing to work with patients to find solutions that are tailored to their specific needs and are more like the individual that donated their time to help me to find a talking solution that worked for me.

Voice banking and recording

This section might be obsolete because there is now voice cloning technology. I have heard that if a person has a thirty second clip of their voice, it can now be used to generate a realistic voice to use with talking apps. The sad thing is that I don’t have any recordings of my voice since I never liked being in videos and I don’t have any old phone messages. Looking back, I wish I had not been self-conscious about my voice because it really was a gift to me and for others. Now my kids have to listen to “Nikki” or “Samantha” or whatever voice I choose from the list of options.

I have a generated version of my voice from ModelTalker, the company I chose for voice banking. The problem is, my voice was already starting to have trouble when I did the hours of recording sentences. The process was arduous—several early morning session when the house was quiet, speaking random sentences into a microphone. The program told me if each sentence was quick enough and clear enough and I had to keep redoing each sentence until it was acceptable. It was very tiring for my tongue and I could only do a few sentences each day for about three weeks. Eventually I finished and submitted the recordings.

I had to wait awhile to get my finalized voice. I was very disappointed with the finished product. My voice was not crisp and clear. It sounded a little bit like me, but not really. We tweaked the treble, bass and other settings but it didn’t help much. I tried to use it and people had trouble understanding me so I realized clarity was more important than authenticity and chose a voice from the samples on my app. At times, to be funny or to be heard by someone with hearing loss, I have used a man’s voice. I have also changed to an accent to spice things up, but I have my go-to voice for normal conversations. It is nothing like my real voice and has no emotion but it gets the job done.

I wish I had used my time recording special messages and stories for my kids rather than doing the voice banking. The recordings would have been special to them and they could have listened to my real voice, even if it was a little quavery. I didn’t have enough time and energy to do both. I didn’t have any warning that my voice was leaving and didn’t realize what to do soon enough to benefit from voice banking. People with other types of ALS should definitely record their voice before it starts to diminish. They will get a much better version of their voice to use when they need it and have valuable recordings to share with their loved ones.

Moving on to solutions I found that worked for me

When I was active and yet voiceless, I found a few apps for cellphones and tablets that I could use to type in my message. It would then speak the phrase out loud and was very convenient. Amazingly, the apps were even free. It was a simple, very effective method of communication for me. (Still harder and with more time lag than speaking, but effective most of the time.) I bought a lanyard that kept my phone within my reach and I learned to quickly swipe words to keep up with a conversation. Predictable was one option. Talk for Me was another, designed by someone who needed it himself. I found it helpful to have both apps because they worked differently and each had its limitations. If one was not working or was frustrating me, the redundancy gave me options and made my communication more seamless.

As time wore on, I began to have trouble holding my phone and typing. I also had to start using a walker and then a scooter. It became harder to use the phone to communicate but it was still more desirable than the large device. I could not stay in one place all day to talk or mount the device to the walker or scooter. I did have to get the large device to begin practicing eye tracking so I would be proficient when I could no longer use my hands and when I was confined to a wheelchair but it was not the best choice for me all the time.

Note that loaner closets and good people that have lost someone to ALS are great resources for finding/acquiring needed items that would be very costly otherwise. I was gifted an older device that was slow and not up to date but a good place to start. I also got a lighter weight android tablet that had the software, from a loaner closet, but it lacked the eye tracker. I could use it with a keyboard, but it was not very helpful that way. I had insurance that would cover a new device, (over $20k) so it was a no brainer to eventually get a new device that was faster and lighter. When I made the choice for an insurance funded device, Tobii Dynavox is the company that my ALS clinics worked with, so for support, I chose to go that route, to make life simpler. For that reason, I am not knowledgeable about the other companies or options.

Because I waited a year or two after my initial diagnosis, I had a new option. Tobii Dynavox came out with an iPad version for their software and eye tracker. It made me happy to be able to go from my iPhone and normal iPad to an iPad with eye tracking to maintain my work flow and daily routine. For me it was a much better option than the android devices.

Eventually the day came when the eye gaze device was the best option. I was in a wheelchair and I could only hold the phone with my right hand and poke at the screen with my less dominant hand because those fingers were straighter. I made the switch and haven’t looked back. At this point, I couldn’t live without it. I mean I could breathe and be alive but what is living without any way to communicate or do anything! I would be bored out of my mind and completely miserable.

I still have the talking apps that I began with, and I use them as backups, but Tobii Dynavox has two software programs, TDsnap and TDtalk, installed on the iPad, which generate words on a small companion screen on the back of the unit, so someone can read as I am typing. I much prefer TDtalk because it is simple and easy for me to write and speak whatever I want. It has room for a few saved messages but I don’t use that feature much. TDsnap has lots of prewritten phrases or pictures which are categorized and can be added to. In theory, it is better because you don’t have to type as much, but it is overwhelming to the eyes and brain to look at the categories and sort through the options, trying all the while not to let your eyes dwell long enough to get a wrong phrase selected. I find it annoying and the blinky movements swirling around the screen give me a headache. To make learning easier, both programs allow you to choose the length of dwell time before something gets selected, which helps you not go crazy as you learn. Once you are a pro, you can make selections quickly and communicate with “ease”.

I appreciate the day and age that we live in. Even twenty-five years ago I would have had to use a non-tech solution to communicate. Slow awkward conversations would be essentially impossible. I probably should practice using a laser pointer on my head to point to letters posted on a wall or a spelling system like the musician, Jason Becker, and his dad designed, called Vocal Eyes, which is a grid of letters, but it’s hard to have the patience for that. Truthfully, I still speak in my own voice to those who are willing to try to decipher my words and to my husband and kids who don’t like it much. It is so much easier to just say something and have the satisfaction of actually talking. I appreciate people that can decipher my words, especially when I don’t have the communication device in front of me. I am only functionally mute, meaning I can still speak.…it’s just really hard for people to understand my words. Having to use a communication device is a necessary ball and chain but it is not possible to have it in front of me every second of the day. Sometimes communication is needed when it’s not available and I am thankful that I can still communicate a little to get my needs across.

General sentiments

A person should always have the ability and right to express themselves, through whatever means possible. People are not useless even if they have speech disabilities and have much to contribute to society. As a mom, I have to give directives to my kids and to help divert disasters at times. When I have helpful things to contribute to a situation and no one can understand me, it is very disheartening to everyone and sometimes I end up yelling, though no one understands what I’m saying. It is hard to just sit passively while the world falls apart around me when I have the solution locked inside me. Even with the machine, it doesn’t always help because I can’t type fast enough or it isn’t working properly or the maximum volume is too low for a noisy room. (Sometimes it’s nice to just be heard, whether people understand me or not, instead of having a machine talking for me.)

On to problems in communicating with others when you have a disability or multiple disabilities

It is mildly amusing and embarrassing when people speak loudly and slowly to me and gesture with their hands as if I can’t hear or think well. I do not know sign language but I try not to be offended because I know they are trying to work through the perceived barriers and connect with me. It is worse when people ignore me or ask my caregiver or friend a question that is intended for me, as if I am not a person or cannot think for myself. It says more about their insecurities and misperceptions than it does about me, but it is hurtful. Now that I’m in a wheelchair, some people ignore me altogether, which makes me sad. I’m not a needy person and I am an introvert but it is nice to have someone smile and say hi as they walk by instead of looking the other way.

Sometimes people go from one question to the next too quickly and don’t wait for a response or they think I am ignoring them when I don’t give them eye contact while I am typing. I am really typing out a response and am trying to keep up with the speed of the conversation. Sometimes, especially in a group conversation, my input is so much slower than the speed of the conversation that nobody knows what I am responding to and it feels very disjointed. I try to abbreviate things and use pronouns in hopes to keep up but it makes things even more confusing. At times, in a one-on-one or group setting, I get so many questions so quickly that I can’t keep up and it fries my emotional circuits to the point that I start crying. I have learned to just answer what I can and go on. I need people to slow down a little and put themselves in my shoes of having to spell everything out. Also, people I know often ask me things when I don’t have my iPad and seem surprised that I can’t answer them. I need people to use their cognitive abilities to ascertain how to interact with me appropriately so it is easiest and least frustrating, like setting up my iPad instead of looking at me stupidly while I say the unintelligible answer five times.

If my device is not lined up with my face just so, conversing is difficult or impossible. Sometimes the device gets wonky and I have to re-calibrate in the middle of trying to communicate. It tends to happen when emotions are elevated and it really doesn’t help the situation to have it go wonky like that. Sometimes, in a family argument, someone intentionally put my iPad face down so I can’t respond, which I can’t fix so the argument is more of a monologue. I wish I could do that to them or put duct tape on their mouth.

If I don’t have the iPad in front of me, yes or no questions are always better for quick communication because I can shake my head or speak a response. “OR” questions are not helpful at all. Which question am I supposed to respond to with a yes or no?!? I end up making things more confusing by answering than by ignoring the person altogether or giving them a sour face. People seem to have a very hard time remembering and adapting to my needs. Even my husband often asks me OR questions.

Occasionally, I have had to just nod my head or say something is a certain way to make things simpler than explaining the real situation when I don’t have my iPad in front of me. It is a strange thing to become a lier for the sake of expediency and survival but when you have such a challenge communicating it becomes necessary. I really have to weigh my words. Sometimes saying anything makes a situation ten times worse. I’m sure that is hard to understand for anyone not in this situation.

Things are getting even harder now because I am losing neck strength. I can’t always lift my head in certain situations to communicate, if my hands have fallen off my lap and my head is down. Saliva collects in my mouth so I can’t respond verbally with my head down without drooling excessively so sometimes I only grunt and shake my head. It’s exasperating for me and my caregiver who has to try to figure out what I need.

There was one summer “child wrangler” we did not hire simply because she would not acknowledge or include me in conversation during the interview even after we explained how I communicate. I was so mad, I had to leave for awhile. I gave my answer of no, I would not hire her when I had calmed down. She was highly qualified and the rest of the family liked her but I knew I couldn’t work with her if she was not comfortable with me as the boys’ mom. I have had enough experience hiring caregivers that I knew I needed to nip the problem in the bud rather than settle and try to work with her, so we kept looking and found someone I could work with.

It is hard to go out in public where people have no clue how to interact with someone who can’t talk. When I looked normal, people would engage me in conversation and I either had to mumble or look rude and start typing on my phone before I replied. Now I have the same problem but worse. I don’t always have my iPad attached to my wheelchair. People often ignore me because they don’t know how to engage with someone in a wheelchair but some people are friendly. I usually just smile and nod or say something very brief.

Device issues

I keep my talking volume at the highest level. For convenience, I made a shortcut to have it revert to max volume every time I go to the talking app because I like to listen to audiobooks and videos more quietly but I need to be heard the first time when I speak and not have to adjust the volume. In crowded, noisy environments, my voice gets lost in the noise and no one can tell I am talking. Around the house, it works well as long as the person is in the same room but I can’t shout to get someone’s attention. I resort to repeating the same sentence over and over and hope that works.

People can look at the back or front of my screen and read what I am saying. Sometimes the sensors read someone else’s eyes if they are looking at my screen and reading along. It makes it harder to type because the dot on the screen bounces around and won’t settle on a letter to type in. Sometimes the words on the back are upside down and backwards and we have to reboot the iPad to get it to work again. It’s helpful to have that feature but it can also be turned off so people can’t see what you are typing before you are done.

Most of the time it is easier to set the iPad on the table when I am at home rather than have it in the way when I am moving. The arm is awkward to go through doorways and limits my vision. When I am outside it doesn’t work at all in most lighting because of ultraviolet rays. In the car, it works sometimes but is a hazard to the windshield because of the post mount. I got a cracked windshield from trying it. At church and concerts and movies it is obnoxious to me and everyone around me to have the screen lit up. In stores it’s not always easy to navigate isles, depending on how wide they are and how busy it is. In restaurants, the bar gets in the way of the table. Therefore, I have found it easier to be mute or take the iPad in its protective case and sometimes the pole and set it up if needed. Also, you have to remove the device and mounting bar from the wheelchair to do a transfer. Sometimes the mounting bar sags or turns and doesn’t keep the device at the correct position and the mounting bracket has to be tightened.

Whoever is with you needs to understand how the device works. My iPad draws power out of the eye tracker so sometimes the eye tracker goes dead without warning and my ability to communicate ceases. There’s a small nondescript button on the back that is invisible to people who don’t know what it’s for. If the battery is drained but the iPad still has charge, I need someone to understand that they need to plug the device in and then push the tiny round button to get the infrared sensors to come back on. More than once, I have had a hard time explaining why I can no longer communicate and how to fix it. Everyone gets flustered until someone who knows comes to the rescue.

I have to have my device set in a specific angle for the eye tracking to work. It is impossible or very hard on me if it is not lined up with my face and at the right height. It is very distressing to try to have a conversation or write a blog or write music or anything else if it’s not reading my eyes well. Sometimes the eye tracking gets wonky and I have to take time to recalibrate the device. On really bad days I have to recalibrate several times or just go stare at a bush in my backyard instead of working with it at all. It seems to sense when I am angry or worked up and begins glitching. If I am crying, the eye tracker can’t see through my foggy glasses. If my glasses are dirty the tracker has difficulty tracking my eyes. Rooms with lots of windows often cause too much glare for the eye tracker to read my eyes. My eyes get dry and tired. Sometimes I just need to get away from the screen and take a nap or go for a “walk”. It is not easy to have to use adaptive communication and although it is a blessing to have an eye gaze device to help me, at the same time it really sucks.