Operating in the Chippewa Valley since 1992.

Fall has definitely come to Northwest Wisconsin! I even turned my gas fireplace on this afternoon to take the chill out of the air. F. Scott Fitzgerald said "Life starts all over again when it gets crisp in the fall." Let's use each new morning to start fresh with an attitude of gratitude, concentrating on the things we do have and the things we can do.

The NW Wisconsin ALS Support Group met last Thursday at the Chippewa Valley Bible Church with 12 people present. Donna Meier, our Support Nurse has arranged for a visit from Lori Banker-Horner, the Care Services Director from the ALS Association - Wisconsin Chapter for our next meeting on October 12 at 1 p.m.
Steve & Kay P. reported at out last support group that they have started banking Steve voice as part of their efforts to deal proactively with his diagnosis with ALS.

Read more about Message Banking here:
(Copied with permission from the ALSworldwide.org website)
  Message Banking: Preserve Your Voice
By: Amy Roman

For many with ALS/MND, losing their voice is closely connected with loss of self and identity. Intonation conveys meaning and personality. Fortunately, there are ways to record your voice easily so that you can continue to communicate with those you love in your own voice and maintain your sense of individuality. These messages can be transferred into any speech generating device and many apps.

The  Message Banking App , created by Amy Roman of the  Forbes Norris ALS Clinic in San Francisco, is a free, online tool that guides people with ALS to preserve their voice through an easy process. As a speech therapist and augmentative alternative communication (ACC) specialist for 16 years, Amy realized that many people were not recording their voices even after being introduced to the idea. To make the process less confusing and overwhelming, she created Message Banking to help people make decisions like what to record and what's the best equipment to use.

The simpler and quicker method is called Message Banking and involves recording common expression in your own voice. This method, unlike Voice Banking, captures your special cadence and delivery. You can record greetings, laughter, your quintessential sayings, words of affection, a blessing, an expletive, pet praise, etc. Everyone diagnosed with ALS should Message Bank as the time commitment is small and the result can be invaluable.

These recordings can be made easily using  Message Banking , a free app available at the Windows Store. This app provides suggested messages, push button recording, and a single press to download all of your labeled, MP3 recordings into a folder on your computer. The MP3 format works on all speech generating devices or Text-To-Speech (TTS) apps that play audio files.

The Message Banking App guides you through every step of the message banking process and provides useful and meaningful message suggestions collected from people with ALS, caregivers and speech therapists.

The Message Banking App is free, fast and simple so everyone diagnosed with a condition that might affect their future ability to speak should use it! The Message Banking App provides you with prompts for common phrases (e.g. “How are you doing?”) as well as messages that people using alternative communication have found useful (e.g. “I have something to add to what we are talking about.”). We also encourage you to bank your special laughter, words of affection, gratitude and praise, pet commands, sports cheers and other phrases that are unique to you.

Only a short time commitment of a less than an hour is required to record your voice using the Message Banking App but the benefits can be truly invaluable. Of course you will not be able to record everything you will ever want say, but you can use the Message Banking App to record many meaningful phrases with your unique delivery. Phrases that you didn’t record can still be expressed using one of many synthesized voices provided by speech generating devices or “text-to-speech” tablet apps such as AlphaCore Communicator for Windows.

“Message Banking can be confusing and even overwhelming,” notes Amy “The developers at Clever Monkey and I created this app to help people through every step of the message banking process. We even provide message suggestions that people with ALS, caregivers and speech therapists have found to be useful and meaningful. 

Not everyone with ALS loses their ability to speak. However, Amy recommends message banking for everyone who has ALS. She emphasizes, “The time and effort to bank your messages with the Message Banking app is minimal, but the benefit can be invaluable to you and those who love you.”

Amy Roman, M.S., CCC-SLP
Speech Language Pathologist
Augmentative Communication Specialist
Forbes Norris ALS Research and Treatment Center

Amy maintains the website  AmyandpALS.com  that offers practical solutions for the everyday challenges of living with ALS.  For more information on voice and message banking, visit  http://amyandpals.com/message-voice-banking .
Communication Strategies
Often ALS progresses to the lips, mouth and tongue, making speech more difficult to produce. There are several strategies that can help the listener to understand when this happens.
Speak in short phrases. It can help if the listener repeats what they have heard, to be sure they've heard correctly .
Point to letters on a board with your finger, a laser pointer in your hand or attached to your glasses. Or use your eyes to gaze at letters on a board as your listener says the letters.
Check out the word board options at www.l owtechsolution s.org
Voice Amplifier
If your voice is weak and others have difficulty hearing you, a voice amplifier can help.

An amplifier was recently donated to our support group. Let us know if you want to try it out.
High Tech communication systems are also available. Talk to your ALS Support Nurse or your Speech Therapist for more information.
Thoughts from Sally
Please feel free to let me know if there are topics you would like to see addressed here in our newsletter. You can use the email link on the bottom of this page.

We are here for you!
Sally Sweet 
NW WI ALS Support Group