During one of my inpatient admissions to Oregon Health Sciences University (OHSU), an intern came into my room. Rather than just doing the typical examination with the usual rhetorical questions, he actually took interest in me as well as in my illness. While we were talking I became suddenly aware of the extent that ALS was rendering upon me. It was not one part of my body that was being impacted—it was progressing throughout my entire body.

Initially, when my voice was first starting to change, I thought about how I had been noticing the changes over recent weeks and months. I could hear and feel my scratchy voice even though I didn't have a cold. At first I thought it was just my imagination.

Since I was clueless to what was happening to my voice, I did not initially associate its changes with my body weakness. Perhaps I was being naïve. I know I was ignorant of the medical basis for what was happening. Also, I had become proficient at verbal compensations in order to hide my poor vocal quality. It was important and essential that I protect my career as well as my personal life.

I became skillful at using my intellect to cover for the voice and speech changes. I would avoid certain words, or avoid words with certain sounds, or shorten my verbal responses. I became well practiced at being concise so no one would question how I sounded.

I realized later that I "looked too good" for the doctors, professionals and even my family and friends. No one would listen to me while I was able to compensate for all the changes. I felt like the doctors and medical specialists were only interested if my body was failing in one way or another. Therefore, if I was able to successfully compensate for one weakness or limitation then, I wasn't believed when I would describe my specific concerns.

For many weeks and months I struggled with my changing voice alone. I truly thought I had to figure it out by myself. All the while I hoped my scratchy voice would resolve. Then I would only have to face that I had a vivid imagination and was just being overly dramatic. This was not to be. My voice and speech continued to progressively change.

Soon I could not correctly pronounce words containing the letter /r/. I had to select my words carefully before speaking. I would quickly think of different words in order to avoid certain sounds or to avoid sounding stupid, drunk or crazy. My voice continued to worsen. I had been noticing that I wasn't able to maintain volume or to project my voice for any period of time. My voice kept tiring more and more quickly. I could not believe that my speech kept deteriorating. I couldn't help but wonder how much worse my voice and speech were going to get.

In 1998 I reported it to Dr. Smith, and later to Dr. Black. Dr. Smith saw me just once. He did report in his note that I couldn't pronounce words with the letter /r/. Dr. Black completely ignored my speech and voice issues in all his subsequent reports. Overall the physicians dismissed my concerns as being irrelevant. One more time I knew I was not being heard by the doctors. From early 1998 and into 1999 I sounded like I had a persistent, chronic slur.

My scratchy voice advanced to needing to clear my throat. At first it was occasional, and then often and finally I needed to clear my voice constantly. No amount of throat clearing helped improve my speech. In fact, it had begun to affect my swallow as well.

I would cough when drinking water or other thin fluids. As I ate food I would tire easily from chewing. Just as with my voice and speech I started to compensate for my swallow so as to avoid the coughing and the constant throat clearing. Frequently, pieces of food would become lodged in my throat. This was frightening. I was fearful of choking.

Initially I was more careful whenever I ate or drank in public. This included lunch at work, going out in the evenings and often throughout the weekends. I took to eating my lunch at my desk alone. I would avoid having dinner before events in the evenings. I learned to take smaller bites and thoroughly chew each bite before attempting to swallow. Then I would swallow hard and deliberately. I reached this place where every swallow became a conscious effort. More significantly the fear of choking became painfully real with every swallow.

One day in early 1999, my brother Hamed called me and he said, "Rabeeh, what is wrong with your voice?" "I don't know." I replied, waiting to learn what he was observing. "Do you have a cold?" He asked further and expressed his concern for me. I knew at that moment it wasn't something I could hide any longer.

Just how was my voice changing? Suddenly I had this idea. I could re-record my answering machine and play it back. Before I erased the old message I listened to my voice several times. I wanted to have a fresh comparison in my mind. When I re-recorded the message, it sounded scratchy to me. It was as though I had a throat cold. It distressed me to listen and hear that the clear, articulate voice I knew was mine had changed so much. I could recognize myself but my voice was distorted. I erased it and recorded it again a second and then a third time. Then I drank a glass of water and tried it again. There was no improvement. I was disappointed and confused.

Soon after that experiment I moved to Oregon in September, 1999. I started outpatient care with Dr. Wendy Johnston, a neurologist at OHSU who specializes in ALS. She referred me to a speech pathologist at the university. Dr. Wendy (henceforth in this article I fondly remember Dr. Johnston as Dr. Wendy) assured me that she was skilled at her work.

When I met with the speech pathologist in late 1999 she was confident and immediately began exploring different communication options with me. I simply didn't want to hear any of it! She was describing the replacement of my voice with some form of a typing machine. My hands were already weak and progressively weakening. I was painfully aware by this time that my arms and hands were changing week by week. The professionals might not have observed this rapid changing but I could feel it within my body. I was aware of it in every activity I did each day.

I felt that this speech pathologist wasn't taking everything into consideration. Didn't she know what this ALS was doing? Perhaps she did but felt this was all that was available. I had a few sessions with her. Every time I left a session I would leave with a severe headache. I know she was doing her best work. At the same time, I can state that I did not feel she comprehended the significance of what losing my voice was. I don't think she had any idea of how terrifying this process was for me. To this day the terror persists.

Therefore, I couldn't and didn't make any decision at that time about communication devices or software for my computer. I was being expected to make one choice over another in all areas of my life. Attempting to assimilate so many changes with no time before the next change was evolving was overwhelming me.

I kept thinking that my laptop would be too heavy to carry around for communication. How could that be practical? There was this head mouse that operated with a dot placed on my forehead. I would scan with this head mouse and make communication selections with head movements. These required strong and stable head and neck support, which I didn't have. In spite of my limitations, this was her recommendation. I stopped seeing this particular speech pathologist.

Within a few weeks of that experience I learned that Dr. Wendy was going to leave OHSU to return to her home country of Canada. That was a major loss for me as well as for the ALS Center. Dr. Wendy made numerous attempts to transition me to other doctors that I needed and would need as the ALS progressed.

During one of my appointments with Dr. Wendy she asked me who my psychiatrist was. "I don't have one," I responded. She had thought I had one. Dr. Wendy was concerned and urged me to get a psychiatrist. I informed her that I didn't feel I needed one. She said, "Yes, you are doing well but you will need one." There was that phrase 'will need' again. Besides who needs a psychiatrist who is always watching the clock?

Then she asked me, "How is it going with your speech pathologist?" "I don't know. I guess not very well." I replied. Dr. Wendy's concern grew. She offered to call this Carol person to see if she might agree to see me. It seems she is a speech pathologist and a psychotherapist. "She is exceptionally busy but if she accepts you as a client she might be able to see you in your home," Dr. Wendy further expressed.

What Dr. Wendy didn't know was that a personal friend who had been someone I had dated gave me the names of two psychiatrists to consider. One didn't accept younger patients, and the other was not someone I could work with comfortably. Within the text of my forthcoming book there are expanded sections of my personal life and relationships and how I believe they impacted my having ALS. Also, my varied experiences with all the medical specialties including psychiatry, psychology and psychotherapy are revisited and explored.

As I shared in the first article published in the previous ZYGO Chatter, my work as well as my relationship with Carol evolved on many levels. The sessions from the start included a range of services. She described how she needed to know everything about me because it all related back to my communication and ability to connect with others. Even when she would ask questions about my breath support or my bowel and bladder functions she would explain how each area was related to what we were doing together.

Early on, Carol focused on my swallow skills because I didn't have a feeding tube at that time. After assessing my oral motor skills she began to educate me about the importance of the feeding tube. I learned there was more than one kind. A physician in the gastrointestinal sciences evaluated me soon thereafter. He determined a PEG* would be best for me. I was fearful that having a PEG would mean further loss of my eating skills, possible loss of taste and smell and it would mean I had to accept at a more conscious level the realization that this disease was advancing. I was resistive, clinging to the fading hope that my body could turn things around for me.

I quickly learned though that I needed to conserve energy for other activities. I had been spending exorbitant periods of times trying to eat and drink small amounts. I began to realize this further weakened me through the exertion of the chewing, sucking and swallowing actions. I learned that the PEG helped me maintain nutrition requirements for battling the progressive aspects of ALS. Plus, all physical exertions further decreased my breath. I was becoming shorter of breath with each passing week.

At the initial session Carol brought the LightWRITER** so I could augment my speech with it. We discussed numerous augmentative and alternative communication (AAC) systems in those early weeks. Because I scheduled the surgical procedure for the PEG within a month of meeting Carol, she loaned me one of her LightWRITER systems for use in the hospital. My sister remained with me during the short stay in the hospital to further assist with communication and my care needs.

I observed during that admission that many hospital personnel are too busy, distracted and uncomfortable to take time with a communication device but they will listen to a human interpreter. I used the LightWRITER some in those early weeks but I also relied on my family to serve as interpreters all the while trying to conserve my remaining speech for as long as possible.

As I stated in the earlier article none of the communication devices were any more efficient than with the other speech pathologist. The need to make a decision, however, was imminent. I was losing my voice. I did decide on the LightWRITER. I picked it because it was light, simple to learn and had different choices of speech output. Carol also showed me that I could later add a scanner connected to a switch for when my hands became too weak to access the keyboard. There are switches available that allow the slightest of movements to make a scanned choice. Before I talk more about that let me first describe the LightWRITER.

It is a text to speech device that relies on my literacy skills for functional uses. I simply turn it on and type. There is little learning except for abstract functions such as short-cuts, abbreviations, and memory storages. I have appreciated that it has two visual displays so that whomever I am communicating with is not leaning over my shoulder to see what I am saying via my typing. They have their own display, which augments the DECtalk for times when the speech output is not fully intelligible. There are many additional features in the set-up functions. For me it was having a device I could use immediately, that was small for transport and easy to use. I also liked the fact that the speech output is relatively attractive to hear.

A scanning LightWRITER is a separate unit that attaches by a cable to the primary unit. A LightWRITER scanner consists of four rows. The first row is dedicated to functions including backspacing, spacing, storing and retrieving memories, a call bell, and an arrow that takes you to the next page. The other three rows are dedicated to the alphabet. First you select a row and then you move along the row until you come to a desired letter. You hit the switch again to make the selection. You continue this process one letter at a time until you spell a single word. This is a tedious and painful process.

As an example, it has taken me more than 20 months to complete a first draft of the book and these two articles. Using my LightWRITER, I would type letter-by-letter, and word-by-word slowly entering the text into the memories of the system. Carol would use the adapted printer attached to the LightWRITER to retrieve the memories. She would review the texts and return with re-typed sections for us to further develop. We edited every section many different times working between the LightWRITER and Carol's computer.

There is a prediction function in the LightWRITER but unfortunately it doesn't have much range of options. It also cannot insert a word, which means you have to organize the sentence well ahead in your mind, choose the simplest structure and still get your point across to the receiver. Having been a computer user it has been difficult adjusting to not having cursor capabilities, which allow movement anywhere on the screen or that allow cutting and pasting. This limitation makes comprehensive expressions tedious and often impossible to generate.

This brings up another point. The vast majority of people don't have the patience for even the simplest of sentences generated via a scanner because of the tediously slow process. Often by the time I am answering a question with the LightWRITER the receivers become engaged in different topics and are ignoring me. Then they will look at my answer and look at me clueless because they have forgotten what we were discussing. It would be obvious they had forgotten they were the ones asking the initial question.

Then they will ask for a key word and still be clueless. Or they will leave the room while I am responding, returning at their convenience to see what I have said. Many people, although some more than others, attempt to speak for me by projecting what I am slowly generating via the scanner. At times projecting a single word that the prediction function will not suggest is helpful. It is frustrating and hurtful though when people see a single word and rush into their verbalization without realizing that they have missed my topic or purpose altogether.

These are just a few of the kinds of obstacles I have experienced using the LightWRITER. I have had to learn not to engage myself in the "real" talking world unless it is absolutely necessary. It is amazing how little people are listening, and I believe that includes hearing themselves. I have come to know that the majority of my listeners are impatient communicators. I am often left lonely and isolated.

There are many occasions when someone will enter my room and start talking without observing if I am able or ready to respond. I realize that I communicate functionally with eye gestures for yes and no. I know most of my family and caregivers interpret my different eye and facial expressions in order to assist meeting my immediate medical and survival needs. This does not replace conversation or comprehensive communication.

The LightWRITER does allow me to have dynamic and inter-connective communication if people take the time. No AAC device will ever replace my own voice. Even now I struggle with believing and knowing I have lost my speech. Communication each day is a full-time job. I have had to learn to observe every detail closely. I have to remember every detail. I have to remain patient with all attempts at communication regardless of whether I am using a mechanical device or my eyes and facial expressions. If the reader learns nothing else from this article I hope it is this; No advanced technology will provide for me as my own voice and speech did before ALS robbed me of it.

As grateful as I am for all the medical specialties in ALS, the rehabilitation services and the technology, I would prefer to have a cure for ALS. Only a cure would give me my life back.

These two articles represent a section of my book, Lost in the Wind. The book covers my earlier years prior to the diagnosis of ALS and some of the events in my life that likely impacted the ALS. I also cover all the ranges in which this disease and its progression have contributed to my life after diagnosis. If these articles have been instructional and supportive to others touched by ALS, I encourage those interested readers to watch for the release of the book.

Note: Please forward your feedback regarding this article to [email protected], as this is a section of an upcoming book. Your comments will guide and support us for the rest of the book.

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* PEG: Percutaneous Endoscopic Gastrostomy is a procedure in which there is the creation of a new opening into the stomach that provides an accessible port for alternative nutrition.

** LightWRITER: A dedicated augmentative communication aid that includes DECtalk, a speech synthesizer, allowing the user to engage in interactive conversation. This AAC aid has many features and is easy to learn for almost immediate functional uses. For more information about this AAC aid please contact ZYGO Industries, Inc.