When I had my surgery to remove 80% of my tongue I knew I would have trouble communicating so I asked my brother Tom to make some index cards with comments and questions and as usual he went above and beyond and included his great sense of humor by adding some mildly risqué cards for fun. I also took with me to the hospital a white board and marker, and some tablets and a pen. After the surgery, I had a tracheotomy and could not talk at all so I relied on the cards with the nurses. I was concerned about the humorous cards, such as a nurse in a provocative position, but when a nurse first saw it she laughed very hard and took the cards to all of the other nurses and they had a lot of fun of with them, as was the intent. It was a little thing but at the time, coming out of major surgery and not knowing what the future held it was a nice tension breaker and the nurses couldn’t have been nicer. I tried the little white board but ended up getting the marker erasing all over my hands so I defaulted to a pad and pen. Unfortunately, my hand writing was not so great to begin with and being in a hospital bed in an awkward position made it even worse. I also tried to write real fast to keep up with a conversation and with speed came a lack of legibility. Still, I used it as a form of communication for months, even after the trach was taken out and I could attempt to talk, however incoherently, because I still have my voice box. At the time, I had 20% of my tongue and a large “flap” from my wrist grafted onto the remaining part of my tongue, so I could talk but not so clearly when I got home.
Unfortunately, the cancer came back and after 6-8 months of incredible pain and sleepless nights, on December 10, 2009 I had my entire tongue removed and was no longer able to talk in a coherent manner. I was not told in advance what the consequences of my surgery would be and I assumed speech therapy would be just that – therapy to help me talk in a more coherent manner.
After my previous surgery, I went to a UC speech therapist and she started out by showing me pictures of a few text-to-speech devices and I was very confused. I was taken aback and in disbelief because I just assumed she would help me talk and I would be fine. When I realized that wasn’t what speech therapy was I got confused, defensive, and afraid and I wanted to run out that room and curl up under a blanket because I didn’t know what was going on. Later, a representative of one of the text-to-speech devices came to my home and showed me how the machine worked. I simply typed into it and pushed a button and the comment or question was spoken by a rather robotic machine voice. The machine also connected to the internet via Windows and there were games that could be played on it. That machine, as I recall, was around $2,500.00, the bulk of which an insurance company would cover.
After my December surgery and a very difficult time in the hospital I was sent to a nursing home for care, part of which included speech therapy. There was a young, bubbly, friendly speech therapist who seemed new to the job and again I assumed she would help me enunciate and talk in a more coherent manner, but she too started out with showing me text-to-speech machines and then she brought me a tablet of pictures and I was to point to a picture indicating what I wanted to say or ask, such as a picture of a toilet, or a picture of a sweating head indicating I wasn’t feeling well. At no time did she ever try to help me talk in a more coherent manner, and again I became withdrawn and confused. It was obvious that speech therapy was not “speech” therapy and there was really no therapy, per se, to it at all. Five years later, I remain confused by “speech” therapy but I have grown to accept it.
As I was using the pad and pen in the nursing home my dad and siblings visited daily and our “chats” were incredibly important to me, but my frustration with not being able to say what I wanted began. My sisters wisely took turns visiting and during a visit with my sister, Kathy, she mentioned an app for the iPhone that was text-to-speech and that it was inexpensive. It sounded great but I didn’t have an iPhone so we were discussing how to get one when Dr. Kevin Bright and Amy Spicher of Mason City Schools visited. Dr. Bright didn’t hesitate and he made a call and got me a phone and then I downloaded my first text-to-speech app, Speak It, for $4.99.
Speak It was great. I could create a library of comments so that I would not have to constantly retype the same one and the audio was not loud but it was okay in a small room with no distractions like a tv. If you are in a situation where due to cancer or some other reason you need a text-to-speech device or app and you need it to be inexpensive then you cannot beat Speak It. Speak It also works on the iPad and iPad mini, and it may work on other such devices but I am not sure because I am an Apple guy.
After I got home I came across another app, this one rather expensive at around $200.00 at the time, Proloquo2go. Proloquo2go is in my opinion the premier text-to-speech app. P2go has predictive typing, a library for comments, and countless icons or pictures that can be used. P2go is what I started using and still use today as my go to text-to-speech app. It also has a wide variety of voices, including American male and female, American male and female youth, British accent, a yelling voice, a close up voice, etc. I use “Ryan” the American adult male, which is the voice most people are accustomed to hearing. There’s another generation called Proloquo4text which I tried briefly and will try again but initially I haven’t been comfortable with it. By the way, you can adjust your settings so that each word is read aloud as soon as you hit the space bar, so if you are a fast and accurate typer then that’s not a bad option. Keep in mind that all of these text-to-speech devices and apps speak exactly what you type and the pronunciation is not always accurate. Sometimes it is best to type phonetically to get the right pronunciation of a word and the only way to learn that is through experience.
Verbally is another nice text-to-speech app and it’s much less expensive than P2go but I haven’t found a need for a third text-to-speech app. I use P2go with Speak It as my back up.
It’s good to have at least a couple of apps downloaded as backups because I have found myself in situations when somehow P2go got accidentally pocket deleted and I had to scramble to my back up.
One limitation of P2go and other text-to-speech apps is the size of the box you can type in. There are only so many words you can type before it fills without scrolling. When I need to make longer comments, such as giving a doctor an update or asking questions, I type them in advance on the “Notes” app. Then I just hand my device to the doctor, or whomever, and let them read it.
Another great option for text-to-speech is simply to open a Word document on your laptop and type a comment, then highlight what you want to have stated aloud and press the buttons you establish as your speak buttons. I own an Apple Macbook Air because it is lightweight and I intentionally chose the smaller 10″ screen for portability. The Air does not have a DVD drive but you can buy that separately, and I can count on one hand the number of times I’ve needed that in the past year. What I like about this option is the faster typing. While my iPad mini is my preferred device, the iPad, iPad mini, and iPhone are slower to type on, even with a blue tooth keyboard attached. Foolishly, I have never learned to type properly and as fast as I think I am with two fingers it would behoove me to learn to type. I had to give a presentation one evening and I found the use of Word to be by far the fastest way to communicate via text-to-speech. There aren’t as many voices or bells and whistles but it’s effective depending on the setting you are in. I don’t carry my laptop around with me which is why you can’t or shouldn’t put all of your communication eggs in one basket. Take the time to explore your options to see what works best for you in various settings.
If you like writing out what you want to say and you don’t want to carry a tablet but you do have your iPad or similar device with you, there are many apps that can help with this. There’s no need to download all of them and there may be better ones than the three I have tried but I like Bamboo Paper, Doodle Buddy, and Art Studio. All 3 have a blank white page and you can write or draw anything you want in any color you want. These are popular with kids and adults, and as I noted I am sure there are many others. This isn’t something I use very often as a method of communication but there are occasions when I am glad I have them. I have seen people using a board to write on and it’s the same thing as using an app. It’s merely a matter of what a person is comfortable using to communicate.
Another pretty cool app is Screen Chomp. With Screen Chomp you can write, draw, have music in the background and record the message as you are creating it. Then you can send that message via email to a friend or family member. I like it but it’s not something I have used often.
E-mail is an excellent form of communication. In my case, due to my desire to comment faster in conversations I dumb down what I want to say and write very simple sentences, and this is more than a little frustrating. Email provides the opportunity to write a more complete thought and initially I thought it was an excellent way to communicate more fully my thoughts and ideas. However, I was wrong. I have found that most if not all people hate long emails and do not read them. It’s the equivalent of talking to someone and pouring your heart out to them only to find out they weren’t listening. Also, I would caution you that there are times when emails get misinterpreted by the reader. You may make a completely innocent remark with no emotion attached to it whatsoever but the receiver may be having a bad day or be in a bad mood when he or she reads it and they then project their feelings onto your words, so be careful and don’t assume that e-mail is the answer to your communication problems.
iMessage texting and other forms of instant text or chat are also excellent. I am unable to talk on the phone because of the incoherence of my words and let’s face it, the telephone has been and continues to be a social form of communication. Those of us who cannot use the phone can find some enjoyment in social conversation via text. There are of course ways you can use the phone through third party connections and if anyone needs help in understanding your options let me know and I’ll include that in a follow up blog.
Telephone. I know I just said I can’t talk on the phone but most doctors, therapists, and others in business do not text patients or customers so there are times the phone is necessary. I have a friend or siblings who make calls for me. I send them a text with the number to call and information I need and they make the call and text me back. This is most often done when I need to make doctor appointments. I always hate doing this because I don’t like being a pest but it’s part of the gig and I’m fortunate to have people who are happy to help me out. I’m unfortunately not married so I do not have someone here to make these calls for me. If you have a spouse, child, or sibling living with you then that helps a lot.
Skype, ooVoo, and Face Time are free video chat services and you may think that they would be of no use but in fact Skype and ooVoo are the best forms of communication for people who are unable to talk or unable to talk in a coherent manner, assuming you can type. I recognize that some people have certain disabilities that would preclude the use of these, at least to some degree. I really like Skype and ooVoo because I can see the other person, he or she can talk and I can hear them, and I can type my comments and have them appear on the screen. They also work on my phone, iPad, iPad mini, and laptop, so whatever device you prefer, they work. Face Time is nice but it does not have the text option. As much as I like this approach to communication and as often as I see them used in tv shows and movies, they simply are not used by people in my life so it is very, very rare that I use them.
When I was working I tried to get people to use these various forms of communication but it didn’t work out because they found comfort in their phones and that excluded me from meetings and information way too often. People you love and those who love you will find a way to communicate with you.
Blogs. After surgery and recovery you may find yourself sitting with friends or family and the conversation may turn to politics, religion, current events, or some family matter and you want to share your thoughts and ideas, but it’s hard. Writing on a tablet, typing on a phone or iPad is slow and you just can’t share everything you want to say. Starting a blog is a way to share your ideas and thoughts without pressing to keep up with a conversation. Sometimes writing a blog is just for you and it doesn’t matter if anyone else reads it. I wrote a blog sometime ago about what happens to a thought deferred and I referenced the poem about a dream deferred which ends with “… or does it explode” and by that I was trying to say how frustrating it is to no longer fully share my thoughts and that there are times when I feel like exploding as a result. Not everyone will agree with what you write but that’s okay because it’s your blog, it’s your thoughts, and neither cancer nor any other disease can take your thoughts away from you. I use WordPress but there are plenty of free options, including blogspot which is Google, Weebly, Web.com, and others.
There is no single answer for enhancing communication for those of us who have been dealt the hand of losing our ability to talk coherently, if at all. There is no machine or single app that works for every person, and all of the above methods of communication have their faults or limitations. None of these replace your voice. None of these provide the special intonation or unique sound of your voice. Text-to-speech devices and apps are not in any way a cure-all. Rather, the apps, all of them, are just arrows in your quiver to enhance your ability to communicate. I would encourage all readers who are similarly situated to not just use a tablet or pad to write a sentence or a few words, but to use a variety of devices, methods, and apps to share your comments, your thoughts and ideas, your real voice.
Over time I have settled into using the following, which I recommend knowing full well that what works for me may not work for other people because our situations may not be the same:
iPhone with Proloquo2go, and iMessage text. I also occasionally use Speak It. I also use Notes for longer comments. I have an iPhone 5s and I am going to buy the new large iPhone because I believe the larger screen will make it easier for people to read my comments. I think the letters might be easier to strike which will reduce my typing errors. It’s expensive in my world but I see it as an important purchase for enhancing, however slightly, my life. I can’t afford it right now but when I can it’s something I will move into.
iPad mini with Proloquo2go, iMessage, Speak It, Notes, Doodle Buddy, Bamboo Paper, Art Studio, Screen Chomp. Word Press for blogs, Skype, and ooVoo. I much prefer the iPad mini over the iPad because it can fit in my pocket when I don’t have the protective jacket on it, it’s lightweight, fits in a coat pocket, isn’t cumbersome, and it does lots more than just communication. I use it for reading books on my kindle app, Nook app, and ibooks app. Magazines, newspapers, and news and sports apps are on it, as are Twitter and Facebook if you’re into that. You can even play Netflix movies on it and project those onto your tv if you have Apple TV. The iPad mini is by far my most favorite device and I will move into the latest version whenever I can afford it but the phone is first because I do not always have the iPad mini with me.
Macbook Air with Word for the reasons noted above.
I don’t see the value of using just a tablet or board when the iPad mini is essentially the same size and does so much more. I see no reason to buy one of the traditional text-to-speech machines that are very expensive and are bulkier than the iPad mini with Proloquo2go and/or Proloquo4text. However, again, each person has to use what he or she is most comfortable using.
I remember the first meeting I was in when I returned to work and I had been told how great text-to-speech was and that all I had to do was type my comment and hit “speak” and it would be as if I was communicating normally. Wrong! I played a comment and people looked at each other and then proceeded as if I hadn’t said anything. It was a freezing cold slap in the face that brought me face to face with my new reality. I then went to an education workshop that had to do with my job and I typed a comment and tried to show it to the presenter. That small action turned into a major event as she had to go get her purse, then fumbled for her glasses, all the while I wished I had not typed the comment which she eventually misread, by the way. I had lost my “voice”, my ability to communicate my thoughts and ideas, and no one in any of those meetings cared. I slowly became invisible and pushed aside. That night I wrote a quick note to Roger Ebert and he wrote back saying that he had many of the very same frustrations. My guess is there are many people who struggle to communicate after oral cancer surgery and for other reasons and I just want to say you are not alone. There are many devices and apps that can help enhance your situation and they are very nice and helpful, but none of them truly replace your ability to talk. There’s nothing we can do about what happened to us, but we can use modern technology to help us communicate. I had to learn to have realistic expectations and to accept these apps and devices for what they are. Just because these devices and apps are not perfect does not mean we should not use them. In fact, as frustrated as I may get at times I don’t know where I’d be or what I would do without all of them and I am incredibly thankful to the people who developed these apps and devices because they have enhanced my situation.
People who can talk coherently do so without giving it a second thought. It’s a gift naturally taken for granted. I remember when I was laying in the hospital and hoping and praying I would be able to talk. I remember thinking that if I could talk I wouldn’t want to talk about the weather, metaphorically speaking. Rather, I would want my words to express my thoughts and I would want to talk about more important matters, including telling loved ones that I love them. You have a gift. Use it for good not evil, use it to lift up rather than tear down, use it to share truth not lies. I also thought about foul language and the use of curse words used so often now that they have coarsened our society and that we have taken this great gift of speech to spew hatred rather than love. I wish I could talk I wish I had my voice back. I wish I had pursued my dream career of being a sports broadcaster. I wish I could still teach and talk with my students and read stories with great inflection and intonation. I can’t do that, but I can use these devices and apps to at least try to communicate my thoughts and ideas, and I am thankful for that.
So, if you can talk, use your gift wisely and as Thanksgiving approaches give thanks for the ability to use your voice to give thanks. If, like me, you are unable to talk or cannot talk coherently, then give thanks for the many ways we still have to communicate.
If you have any apps or communication devices you feel I should add to this blog, please let me know and I’ll add them as an update.