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New: Polyana II with Persona — A typing / scanning / talking communication aid
The system consists of the Polyana with Persona installed in non-volatile memory, keyboard glove, carrying case, and switch adapter to turn on the unit with the scan switch. The only option at this time is a transparent keyguard. Files can be saved and printed via the unit's infrared port directly from Persona.

• Comfortable size
• Simple to use!
• Large keyboard
• Touch screen
• Switch scanning

Simply type or scan text, speak it, save it, print it ...

Improved: LightWRITER SL87 Base Plate
The latest shipment of LightWRITER SL87s have arrived with new base plates. Rather than the flat, machined polycarbonate plate, the new base plate is a very attractive molded part.

Special: Parakeet 5 with Carry Case and Wordwise Sticker Pack for $175.00
Simple and easy to use — Regular Price: $425.00

by Rabe'eh Mahooti, MS
and
Carol L. Nugent, MS, CCC

During the spring of 2001 a friend from the East Coast came to Portland, Oregon for a visit. It was wonderful to see her even though most of our conversation was one-way. I am able to communicate only with the use of an electronic augmentative communication system. It is slow and labored. I will discuss this system and the meaning of one-way communication in further detail later. On the Sunday my friend was here, it was a gorgeous day. We went downtown to the waterfront. I wanted to burst out of my body and feel my feet touch the earth, feel the breeze, and smell the air. We spent time looking at the river while she and my family had appetizers and drinks. We stopped at Salmon Springs for a few minutes to watch the children play in the water. Then we drove home through the city observing the crowds of people.

When I got home I cried for four hours because I had begun to feel like a piece of meat, but with feelings and a fully functional brain. Being on the waterfront with my friend and experiencing those feelings prompted my attempt to describe the day and its impact to my speech and language pathologist. She suggested I write about the experiences that led to those feelings. Over the next few months, by using my communication system, I typed most of my experiences that had left me virtually motionless, voiceless, and disconnected from everyone except through a process both tedious and mechanical.

As I write this, I am a young woman of 40 years who was diagnosed in 1999 with Amyotrophic Lateral Sclerosis (ALS). The diagnosis came only after at least two years of progressive physical changes. The disease ended my career as an ASIC engineer. My dreams of getting married and having a family were shattered. My body has weakened to the extent that I require a lift and an electric wheelchair for all movement. I breathe connected to a ventilator 24 hours a day. My entire life has become centered on this disease, and on my attempt to sustain life.

Within a few months of returning to the San Francisco Bay area in 1996, I began to notice that I was chronically tired and had no energy for anything. I felt like I was falling into a deep canyon. I had no control. And that fall has never stopped. For example, once I lay on the living room floor from Friday after work until Monday morning. I didn't eat or drink or use the bathroom. I was in a shallow sleep state with no dreaming. My brain seemed to be stopped! I was more frightened than I had ever been in my life.

A former employer that I respected encouraged me to see my physician. He thought I might be depressed. I was stunned. I disagreed and said I have been sad at times but certainly not sad all the time. My former employer explained that sadness is not depression. I began a series of appointments with my primary care physician (PCP). Every time I met with her I would cry. She started me almost immediately on 10 mg of Prozac a day with a scheduled increase to 20 mg a day. Although it lifted me some, it didn't help much.

My primary care physician ran a series of blood tests but found nothing wrong. Although she was concerned, she was honest. She said, "I don't know what is wrong with you." Soon after, my crying increased significantly and was often accompanied with a frantic feeling. I saw my doctor and talked with her on the phone several times. Within a few weeks, she said she thought I should see a psychiatrist. She said, "I know a good psychiatrist, and I think you should go see her." I accepted her recommendation. It was a good place to cry. This psychiatrist knew I was on 20 mg of Prozac a day, and she encouraged me to continue. I had my suspicions about what was happening to me but I knew neither my doctor nor the psychiatrist was open to my insights. Continue reading this article

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.

May 30 2002 ... Graduation day for the class of 2002, a day that was a formality for many graduates and their families. Easy for me to say because we have seen our four older children graduate from high school. Our daughter Sarah's high school graduation was a day full of dreams that we thought would never come. For our family, a day that we had been told would not come. We were told that Sarah would not live to see her 2nd birthday. Sarah has cerebral palsy and is in a wheelchair. She has osteogenisis imperfecta which is a bone disease that has caused a sever hearing loss, a seizure disorder, a trachea tube to help her breathe and a gastric/jejunal tube for feedings. She has had sixteen surgeries related to her stomach, three in the last year. Did Sarah give up? Absolutely not! Did her family? Fortunately we never gave up all at once, we balanced each other taking turns staying at the hospital. Sarah had only been out of the hospital for 34 days when a classmate pushed her across the gymnasium stage to receive her diploma. Then this really special, almost magical moment came after Sarah was handed her diploma. She thanked the community using her communication device. It wasn't a long speech, it was actually quite short. She had 8 choices on that page of her MACAW. As we were getting ready to program a special graduation overlay, a part of me wanted to program only what I wanted her to say. For those of us that have kids or spouses, we all wish at one time or another that we could program just what we would like them to say. I knew that was unfair and her two sisters intervened with what they thought would be appropriate. What I thought was appropriate and what her 22 and 25 year old sisters thought were two entirely different overlays. Her domineering big brother thought that she should just smile and look pretty (he was quickly vetoed!). Then her friend intervened and pointed out that maybe Sarah should decide using Boardmaker (a computer program with a picture data base). Well, we all looked at each other feeling rather guilty and proceeded to let Sarah choose the pictures that she wanted for her graduation day. Sarah is much like any other teenager and she sometimes won't talk (using her MACAW) and sometimes talks inappropriately (using her MACAW). But the great thing is that she has the option to talk or not talk and to talk inappropriately like other young graduates. But Sarah did push the pictures that she wanted that day, the words that she said over and over were, "thank you." As they continued across the stage, she pressed "I'm going on vacation!" Sarah made her point. The entire gymnasium stood up and clapped, and yes I cried but they were tears of joy.

Sarah used her MACAW throughout the afternoon and evening and she received cards and gifts and other graduation parties. Sarah knew that "thank you" was a necessity on graduation day; after all, she picked it out and choose where it would go so that she could easily press it. Using her MACAW enabled her to say what she wanted and for that her family is thankful.

Making overlays with teenagers and young adults can be a real challenge. In the next few months look for ZYGO Chatter to discuss some of those challenges and some ideas from clients and their families and caregivers. Sarah is beginning a new job which brings with it a whole new set of communication goals that we will tackle.

Medicare 101 - Funding Tip

According to Medicare (Spring 2002 DMERC Medicare Advisory, Page 35), the second most common reason for returned claims is a missing or invalid patient Medicare number. To prevent this from happening Medicare suggests that the supplier obtain a copy of the client's Medicare card. Clients and their advocates can help ensure prompt reimbursement by providing all the requested documentation.

September 2002

October 2002