Voice Lessons: Speaking With ALS
by Michael Olshan
The task of informing family, friends, and associates of a diagnosis of amyotrophic lateral sclerosis (ALS) is perhaps only fractionally less painful than hearing the diagnosis in the first place. I went through that process in April 1998, and it was emotionally wrenching beyond endurance. Although most of my friends knew a bit about ALS, even the most well-informed thought that its onset occurred in the limbs. When I imparted my newfound knowledge that 25% of ALS cases begin with weaknesses in the muscles involved in speech production, the invariable response was: How ironic that you should have an illness involving speech.
A very small irony, of course, but a real one. I love language, and have been an enthusiastic (some would say, incessant) talker since childhood. I majored in English and have worked in fields - publishing, advertising, and direct mail advertising - in which articulateness and the ability to speak in a pleasant manner were essential qualities. I always took a degree of pride in both my verbal abilities and my baritone voice. Occasionally, someone would ask if I had ever been on the radio, and it was a question that I always enjoyed hearing.
My diagnosis took place after almost a year of searching for the reasons for a series of often vague, rather fugitive symptoms, including an occasional inability to breathe for a few seconds after gulping a cold drink or diving into a pool. The most alarming symptom, however, was an intermittent but increasingly noticeable difficulty in projecting my voice normally. I saw several specialists, including a neurologist, without anything approaching a definite diagnosis.
By March 1998, my vocal projection was very weak and my speech was quite slurred. The owner of my company sent me to his neurologist, who promptly made the correct diagnosis. Late that day, I went to the bookstore to learn everything I could about the disease (our PC was largely the province of my two children at that time; everything I've subsequently learned about its wonders was ALS-driven). What I read was not encouraging, and the information that jarred me the most was the brief mention that a small percentage of patients are entirely "locked in," without any means of communicating with the outside world. I took some solace from the descriptions of recent advances in research and assistive technology, and resolved to live as normal a life as I could for as long as I could. Obviously, the only way of accomplishing that aim was with some sort of augmentative communications device.
Equipment, Costs, and a Decision
By May, I was already a patient at the ALS Center of Beth Israel Hospital in New York City. I consulted extensively with the excellent speech-language pathologists (SLPs) and occupational therapist at the clinic, and attended a symposium that included an equipment fair where various types of augmentative communications systems were exhibited. My first insight was simply an extension of the realization that most of us have come to when contemplating the purchase of any high-tech marvel: There was an abundance of choices, and I ran the acute risk of committing my resources to something that might soon be technologically obsolete, not to mention wildly overpriced.
Clearly, my illness introduced some additional variables. All of the more sophisticated communication systems were expensive. Even if I was fortunate enough to obtain insurance funding, I had to settle on one device that would adapt to my changing needs over what I fervently hoped would be a long period. I attempted to conceive of what all of those changes might entail. It was a very painful imaginative leap as well as a highly speculative one. Since every individual' s progression (I have grown to loathe that word) with ALS is unique, the stages cannot be charted with any certainty.
The basic criteria I developed for making a choice were rooted in my determination to remain as engaged in the world as possible. My employer strongly supported my wish to continue at my job. He had already hired an assistant who, among other things, served as my "telephone voice" with clients. I needed a device that I could use both at work and socially, so it had to be portable enough to carry constantly. I wanted the best possible vocal quality, since I anticipated using it on the telephone and to make fairly lengthy presentations to clients. Finally, I wanted the most flexible system to allow me to adapt to the changes I would experience during the course of the illness.
I tried out and considered several "dedicated" devices (i.e., equipment whose sole purpose was assistive speech) before deciding that a better personal choice was a laptop computer equipped with the speech synthesizer package from Words +. Although it was larger and considerably heavier (about 12 pounds with accessories and case versus about three pounds for The Link), the Words + computer was far more versatile since it offered the full range of tasks that a computer can perform. Best of all, the vocal quality was quite good, and the internal modem allowed me to make telephone calls directly from the computer, with only a connecting wire to a telephone jack.
Fully equipped, the Words + laptop came to just over $6,000. I had already been told by several people that many insurance companies would not cover augmentative communications devices, and that most would exclude non-dedicated, computer-based systems. I huddled with Jeri Weinstein, one of the wonderful SLPs at the ALS Center. We determined that the language in my policy was pleasingly vague, and decided that it was well worth a try.
The documentation that Jeri soon submitted to the insurance company was remarkable for its thoroughness; it resembled a legal brief more than an application for coverage. She followed up with many telephone calls to the insurer and, in a short span of time, the request was approved. The insurance company finally paid all but about $1,300, and my own company paid the balance.
Still a Good Choice
I remain very pleased with my choice. Since my limbs, thankfully, have continued quite unaffected by the illness, I still don't find carrying it particularly burdensome. If I do, I can use a luggage carrier; farther down the line, it can be mounted on a wheelchair. The speech synthesizer is excellent. I've found that some people have difficulty understanding it over the phone, and it's a simple matter to regulate both volume and speed to alleviate that problem, Since I'm a fast touch typist, I haven't used the sophisticated strategies that the program includes to assist users with impaired dexterity, such as word prediction and abbreviation. With word prediction, the program stores a list of the words you use. As you type the initial letter of a word, a numbered series of words beginning with that letter appears on the screen. If you type the number corresponding to that word, it appears in your text. With abbreviation, you set up your own codes for frequently used phrases, so, for example, typing "asap" results in the computer speaking (or writing out) "as soon as possible." If and when I lose all manual dexterity, the system allows for single-switch scanning with a "Jellybean" switch.
By now, my speech is virtually gone, except for the occasional short phrase. I am heavily reliant on my synthesizer. In social situations, the computer functions very well. The battery lasts for about an hour and a half, and I have an auxiliary battery pack that lasts far longer. In restaurants, I've learned to modulate the volume to a point where the voice is audible but unobtrusive to others, although I've grown accustomed to inquisitive looks.
Surprisingly often, those looks are followed by inquiries about the machine from people who have family members with speech impairments due to strokes or other causes, and I have to resist the temptation to play physician without a license or SLP without certification. I give a brief description of some of the options, and suggest that they consult a SLP or other professional who knows those options and can assess which type of system is best suited for the individual's needs.
I have no difficulty using my computer when it comes to in-house situations. I use it constantly on the telephone and, when I need to discuss or authorize work in process, it' s a simple matter to disconnect the cords to the electrical outlet and the telephone jack and carry the computer around with me.
Client contact is a far more delicate matter. Since my superiors were justifiably concerned that some of our contacts would react adversely to a synthesized voice, I sent two letters to my clients: the first informed them in general terms about my illness; the second introduced my assistant and the strategies we had devised to cope with my disability. We decided to retain that system, and introduce the computer voice slowly, discreetly, and only with those clients with whom I had long-standing relationships.
A Necessary Voice
I am truly bewildered by the logic of those who assert that augmentative communications devices are somehow less "necessary" to an ALS patient (or any other person with a serious speech impairment) than a cane, wheelchair, or any other piece of durable medical equipment. The thought of an alert mind, trapped without any means of communicating with the outside world is the stuff of nightmares...especially now, when incredibly advanced assistive technology is making the means of communication available to almost everyone.
Living without a voice, like living with ALS generally, is a constant state of flow. You have to adjust to situations and have your coping mechanisms and strategies ready for the changes the illness brings. I miss my voice, and sometimes dream about it. Recently, my 10-year-old daughter absolutely rocked me when she casually remarked that she hardly remembered what my real voice sounded like. And yet I am confident that with planning, forethought, and assistance from the dedicated professionals in the ALS community, my own journey with the disease will never be a silent one.
Michael Olshan, 49, lives in Pomona, NY, with his wife and two children. For the past 17 years, he has been a senior account executive for a direct mail and printing company in New York City. He plays an active role in fundraising and promotion for the New York chapter of the ALS Association.