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New Idea: Share your story with us — Are you using your ZYGO communication device in an interesting or creative manner? Share your story with us for publication in future editions of ZYGO Chatter and we'll send you MACAW Overlay Books for free. Whether you own a MACAW or not, these colorful MACAW Overlay Books are the best treats for this holiday season. Starting with Halloween and Thanksgiving and ending the season with Chanukah and Christmas. This collection is filled with songs and activities suited for the occasion. These overlays allow your creativity or your unique expressions to be unleashed. This thank you gift valued at $110.00 could be yours.

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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. 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.

The Polyana with its new Persona software has met with favorable comments from consumers and speech clinicians alike. First and foremost it is a communication device — a typing, scanning, and talking communication aid. The Polyana has excellent sound output. Volume can be adjusted in direct select or scan mode. Letter/font size for the main screen can be varied from very small 1/8 inch (font size 10) up to about 2 inches (font size 120) in height. Background color can also be easily adjusted in the user's Preference menu. The larger font seems to be advantageous for individuals with visual impairments and/or lower cognitive function, giving reinforcement as the word is spoken. When Word Prediction is enabled, a column to the left of the screen suggests words that may follow a completed word. To access the word wanted, simply select the corresponding number and the word will be typed in. Persona software has Learned Word Prediction capabilities. It remembers the words that are typed, adds them automatically to the Word Library, and makes them available the next time they are needed.

The Phrase option allows the user or caregiver to store often-used phrases and retrieve them quickly and easily. They are stored alphabetically; A may have "Are you ready?" or "Apple pie would be nice." H may have "hello," "hey," "have a good one" or whatever the user wants to store.

Abbreviation Expansion lets the user use fewer keystrokes (or switch activations) to retrieve words or phrases that have been stored. For instance, b4=before; mn=my name is Aileen.

Speech Exception allows words to be pronounced differently than the synthesizer says them. For instance, my name, Mindy, when typed in without Speech Exception sounds like Mind-ee, like mind with an e. With Speech Exception, I am able to have the Polyana always pronounce it correctly; Min dee.

Polyana with Persona ships with three standard on-screen keyboard layouts: Optimized, Alphabetical and QWERTY. Optimized, which uses a frequency of use layout, is the most efficient for row/column scanning. Persona software provides a Keyboard Edit Function to allow customization of the on-screen keyboards. Both Linear and Row/Column options are available to the scanning user. The user is able to adjust the scan rate to fit his/her individual needs, which may change often.

Now that we know what the Polyana with Persona is capable of, let's explore its practical day-to-day uses and the target users.

ALS is the diagnosis of my first user. She was diagnosed 6 months ago and has limited fine motor functions. She presently uses a desktop computer for making lists, Internet use, and some communication. She does not have a specific communication software program for her computer. Instead, she types words out and points to them. Both she and her family get very frustrated. When they go out she is basically unable to communicate her needs. Eventually she will need to use scanning, but not quite yet. When we tried the Polyana with Persona she loved it! She was able to communicate with her family and friends and she put several phrases in the Phrase bank. The Polyana with Persona is extremely portable and has a long battery life for going out and about. I showed her how simple it is to make a grocery list with Persona. She made sure that "Thanks," and "Here are my coupons," were at her fingertip under Phrases. She could have printed the list off had she wanted to, but she wanted the opportunity to speak using the Polyana.

Cerebral Palsy is Sarah's diagnosis. Sarah is presently a young adult MACAW user, but likes the dynamic screen the Polyana offers. She is able to identify between 2 and 8 icons on the MACAW. Presently she uses pictures but has some reading skills. She needs the letters to be really big, and it is reinforcing to have each letter spoken as we hand-over-hand type them. Once we have some phrases typed in, the Persona begins predicting what words may come after the last completed word. Sarah gets very excited using the Polyana! We used Speech Exception to get the correct pronunciation of her service dog's name. We Put, "Taz do you want a dog treat?" under Phrases, and she repeatedly asked the question. Taz got lots of dog treats!

We also used the calendar function on the Polyana's desktop. We copied the contents of a particular event, pasted it into Persona, and then spoke it to her friend on the speakerphone. Sarah loves dynamic displays but does not need all of the features that more advanced, expensive systems have. The Polyana with Persona is a cost effective alternative.

These are just a few examples of the many possibilities that the Polyana with Persona has to offer.

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Medicare 101 - Did you know?

The beneficiary should sign the Medicare claim form whenever possible, but if the patient is unable to sign:

• He/she may make their mark and have it witnessed, the witness must give his/her name and address.
• A legal guardian, representative payee, relative or friend may sign giving his/her name, address, relationship and reason for patient's inability to sign.

The first annual Oregon and SW Washington Walk to D'Feet ALS took place on September 14th at the PCC Sylvania Campus track. The Walk raised funds for the local chapter of the ALS Association to be used for patient services, awareness and research.

Throughout the course of the day many of us at ZYGO are privileged to hear from Augmentative and Alternative Communication (AAC) users and their families. Often they share stories about their experiences, some tearful, some maddening, and some humorous. Many of our clients have shared their stories of ALS and their struggles with this disease. When we received an invitation to participate in the Walk to D'feet ALS, we didn't hesitate to sign up. ZYGO is honored to lend its support to eradicate such a devastating disease.

For information on future walks, visit http://walktodfeet.kintera.org/portlandor or call the local chapter at 503-238-5559 or toll free at 800-681-9851. You don't have to walk, but we would love to have you join us and show your support to those living with ALS. By walking, you will have a great time and show your support for those facing this disease.

Together we can make a difference and help conquer this devastating disease.

Polyana II with Persona Tip: It may not be readily apparent about how to change from the keyboard mode to the scan mode or visa versa on Polyana II with Persona—so these simple instructions should help:

To go from Keyboard to Scanning mode

1) Click on the "File" menu
2) Click on the "Preferences" menu item
3) Under the "Input" tab, select "Scan" Input Mode
4) Click on the "Close" button to go to Scan mode

To go from Scanning to Keyboard mode

1) On the keyboard, press and hold the "Ctrl" key while pressing the "P" key to go to Preferences
2) Under the "Input" tab, select the "Keyboard" Input Mode
3) Click on the "Close" button to go into Keyboard mode

MACAW 3/Great Green MACAW Tip: Carrying the following procedure will help those who wonder why their MACAW is no longer allowing them to record.

When a short message is "overwritten" by a longer message using the EXTENDED RECORDING function, a portion of the unit's memory is vacated and left abandonded. Compacting the memory in your unit will leave the MACAW for additional recording.

1) Switch to RECORD Mode
2) Press f.11 (CONTROL), then
3) Press the COMPACT MESSAGE Key #23 (in MACAW 3) or MESSAGE Key #103 (in Great Green MACAW), then
4) Press f.12 (YES)
5) Switch to PLAY Mode

This procedure will process the MACAW memory files to remove any unused portions, leaving the unit with as much free memory in he MemCard as possible. Key #23 or key #103 will blink while "doing its thing."