Fighting ALS

 

A Psychologist’s Personal Journey into Augmentative Communication

By Craig J. Oster, Ph.D.

My Need for Augmentative Communication

I was diagnosed with Amyotrophic Lateral Sclerosis (ALS or "Lou Gerhig’s Disease) in 1994, two years after the onset of symptoms. In addition to the muscle weakness in my arms and legs, there was weakening in my tongue, facial muscles, soft palate, respiratory muscles and other components involved in speech. This resulted in significant impairment in my speech, including low volume and slurring of words. Most of these losses occurred within the first few years of my diagnosis. My search across the country led me to a number of cases of remission and even reversal of ALS. This led me to develop a personal holistic health program and my condition has been remarkably stable since the development of this program (There were several years of very gradual losses and recently there have been signs of small improvements).

At the time of the diagnosis I was in the final two years of a Ph.D. program in Clinical Psychology at Michigan State University. It was difficult for me to imagine a life in which I was not doing psychotherapy. So, even though the diagnosing physicians at The University of Michigan hospital said that I may not live much longer than two years, I moved forward toward completion of my doctorate degree while working on my health and healing at the same time. In January of 1997, with enthusiasm and excitement, I opened a psychotherapy private practice. I am happy to report that I am still maintaining this practice.

Within one year of my diagnosis, I entered speech therapy at Michigan State University. Nearly two years of treatment assisted me in maximizing my powers of speech (After obtaining the Speech Enhancer, another brief course of treatment elsewhere was required to assist me in optimally using the device). Early in this treatment I was introduced to Dr. John Eulenberg, the Director of Michigan State University’s Artificial Language Laboratory. Eulenberg poignantly shared how he had lost his own father to ALS. When his father was healthy and Eulenberg was a boy, his father told the boy that whenever he squeezed his son’s hand it was a message that he loved him. Years later, when the boy grew up to become a husband, father, and university professor, he discovered his father had been stricken with ALS. Soon the time came when the elder Eulenberg’s only means of communication was to squeeze his son’s hand. Eulenberg was deeply touched by his father’s love but was grieved that his father had to experience such a severe limit in communication. Eulenberg became determined to give greater communication power to following generations of persons with this condition, as well as to individuals with other conditions that limit communication.

He invited me to join one of his research projects. Eulenberg told me that, working with him and his assistants, we would develop a data bank of my voice recordings. He explained that it was his intention to develop a computer program that would allow me to use a computer to communicate in my own voice! I was deeply touched. It was clear to me that I was not only going to be working with a brilliant and innovative Scientist-Practitioner but also with a heart-centered man with great compassion—a man who has become a dear friend.

So, we spent nearly two years(?) recording every consonant-vowel and vowel-consonant combination used in the English language. In addition, we recorded lists of common words along with phrases I would anticipate regularly using in my personal and professional life. In addition, Eulenberg conducted a ‘technology evaluation’ to identify what kind of a computer and other equipment I would require should my condition significantly change. Fortunately, my condition has not required me to utilize the voice data bank. It is deeply comforting to know that if I did physically lose my voice, I would still have the power to communicate with my own voice!

Nonetheless, the losses were significant enough to motivate me to obtain a portable speech amplification unit that could be worn on my body, without hindering my walking. Persons who are familiar with my speech can usually understand me although there is increased difficulty for both the listener and myself under certain conditions. Some of these difficulties involve fatigue, background noise, and telephone communications where visual cues are absent. People who are not familiar with my speech have had even greater difficulty understanding me under such conditions.

A friend of mine, a speech sciences professor, informed about the St. Louis based company Electronic Speech Enhancement (ESE). This company designs, manufactures and sells an augmentative communication device called the Speech Enhancer. This device that listed for about $5,300.00 at the time, amplifies and clarifies speech. After reading the marketing literature from this company, I was quite impressed and decided to work on obtaining their product. I did not investigate any other augmentative communication devices on the market; thus, I will not evaluate how this product compares to others in the market, in terms of technology, quality, cost and so forth. I shall simply discuss my experience with this particular instrument. I will first describe the Speech Enhancer and then discuss how this device had impacted my life. Next, I share the challenge that was involved in obtaining funding, followed by some helpful information for others who seek funding for this or other augmentative communication devices.

The Speech Enhancer

The Speech Enhancer consists of a headset microphone and a lightweight battery-powered unit attached to an adjustable belt designed to be worn around the waist. I find it easier to use the belt as a shoulder strap so that the unit rests below my waistline. The headset microphone has a small speaker that is placed over one ear so you can hear your own clarified speech. When the Speech Enhancer is not being used it is plugged into a battery charger, which plugs into a wall outlet. Wheelchair users can hang the unit over their wheelchair. The device works with the telephone and voice recognition software. When utilized with voice recognition software, the Speech Enhancer can be plugged directly into the computer microphone jack.

When I speak, my voice is instantly reproduced sounding like me but clearer and louder. According to the company’s brochure:

Automatically adapting to an individual’s voice-characteristics, it [the Speech Enhancer] analyzes the articulation, resonation and phonation, then in real-time…makes a best-fit clarification of speech. It helps primarily with omissions and distortions. Substitutions are not corrected by the device, however therapists may find that the auditory feedback channel assists the person to correct their own substitutions.

I have found that the auditory feedback channel does help me make corrections that make my speech more intelligible.

Ambient or background noise can mask speech, thereby decreasing intelligibility of the speaker’s message. This is especially true for people with unclear or soft speech. Traditional microphones pick up the loudest sound present; for persons with soft speech, the background noise is often the loudest sound present. The company’s Proximity Microphone, which is placed very close to the mouth, blocks ambient or background noise.

The Speech Enhancer, especially when used in the ‘Ultra Sensitive’ mode, allows me to speak more clearly at a normal volume with less effort. The Ultra Sensitive mode generates some speech sounds that I produce at a sub-audible level. This mode is extraordinarily helpful to me. When I first acquired the Speech Enhancer, the only way to use this mode was with an external speaker that was placed near the user, or to have the listener listen through ‘privacy headphones.’ The company explained that the Ultra Sensitive mode was too sensitive to be used with the unit’s internal speaker. (Edit: I do not understand what they mean by this.)

Recently, ESE created the Vest Pocket speaker, a very small speaker that is placed inside a shirt or coat pocket. The fabric barrier minimizes feedback that can produce a squealing sound. The lightweight Vest Pocket speaker is plugged into the Speech Enhancer allowing the user to use the Ultra Sensitive mode full-time. Because of my limited manual dexterity, I decided to permanently attach the speaker to the shoulder strap so that it rests at waist level. I covered the speaker with some heavy fabric to minimize feedback.

I will now share how the Speech Enhancer has impacted my life.

My Personal Experience with the Speech Enhancer

The Speech Enhancer allows me to meet my medical needs with a higher level of independence. To illustrate, I experienced a medical emergency during the week I obtained the Speech Enhancer. Falling tends to significantly deplete my available energy, thereby making speaking even more difficult. Although weakened and traumatized by the fall, this device allowed me to successfully communicate with emergency room personnel in a chaotic and noisy hospital environment. I also enjoyed being able to easily speak with my friend during the long period of time we spent in the waiting room. I was especially pleased to be able to communicate with the doctor who would stitch my chin, without requiring much ‘translation help’ from my friend who is more familiar with my speech. Thus, I could assure that my medical needs were properly met.

I had another, more serious, fall before I acquired the Speech Enhancer. Unfortunately, I was unable to effectively provide the paramedics with all of the information they requested. Then, when I was placed in my emergency hospital room—with a broken nose, fractured cheekbone and a bloody gash near my eye—I was unable to get the attention of medical personnel who were walking by my room. They could not hear me. Because of the way I was tied down on the stretcher, I was unable to move my head. I was afraid I would begin gagging on my own blood. Fortunately, someone came before a problem arose but if I had had the Speech Enhancer I could have been heard, instead of lying there helplessly!

This augmentative communication device allows me to meet my medical needs in other ways as well. It helps me to order prescriptions, schedule medical appointments, and to communicate with healthcare professionals and caseworkers. When these communications occur on the telephone, the Speech Enhancer is especially helpful. Communicating on the telephone tends to be more difficult than ‘in person’ communication. The other person cannot see my facial expressions and the movement of my lips. These can provide a context for what is said, thereby leading to increased intelligibility. The Speech Enhancer helps me to compensate for the absence of these contextual cues.

I also experience increased ability to communicate in social situations that involve significant background noise: dinner parties, church, airplane travel and so forth. In such noisy situations I can share my thoughts and feelings with loved ones. This means the difference between the despair of feeling separate, alone and isolated or feeling the joy of being connected with others through language. I also experience enhanced ability to communicate with elders who have hearing impairments. Furthermore, I can share my needs with others who are not familiar with my speech, for example, "Stewardess, I will be requiring some assistance when we arrive at the gate."

I am a clinical psychologist and I have a psychotherapy private-practice. Effective, clear communication is essential to my being able to help people. The Speech Enhancer assists me in the doing the work that I love, which is extraordinarily meaningful to me. It is such a joy to be able to translate the hard work of 13 years of higher education into helping people. The Speech Enhancer enables me to speak more clearly and with less effort, thereby conserving my energy.

Funding Resources Available

According to ESE, third party funding is available for the Speech Enhancer. They indicate that funding has come from many sources, including insurance, vocational rehabilitation, school-funding and Medicaid. The company states:

It is essential to document medical necessity for Medicaid and insurance or the person’s current or future employability for vocational programs. First, obtain a thorough functional evaluation by a Certified Evaluator. If their independent recommendation is for this instrument, submit complete documentation, in writing, to the funding source: speech language pathologist’s report, physician’s order and system quotation.

If an individual is interested in obtaining a Speech Enhancer, ESE will provide the consumer with specific guidance for obtaining funding. If an instrument from another company is desired, I recommend calling that company for specific guidance. 

 

 

Dr. Oster is a Clinical Psychologist in private practice in Lansing, Michigan. He has a special interest in working with individuals who are living with physical challenges.

To contact Electronic Speech Enhancement, Inc. for information call 1 (800) 600-9819 or write to them at 12190 Natural Bridge Road, St. Louis, MO 63044. Their Internet address is Http://www.SpeechEnhancer.com.