PALS (Persons with ALS/MND) face many challenges over the course of the disease. Most PALS and family members are finding that they have to educate themselves not only about the facts of ALS/MND, but about the variety of treatment plans and options available to meet the changing needs that occur with ALS. One of the most important areas PALS and family members want to know about is the change to speech and the ability to continue to communicate.

This website is dedicated to providing educational information about the right to the most effective communication possible through the stages of ALS. This goal can be accomplished through the use of multiple augmentative and alternative communication (AAC) strategies and the use of an AAC or Speech Generating Device (SGD). The information presented here is intended for PALS and family members as well as clinical ALS/MND team members. The information on these pages will help prepare PALS and family members to participate in the decisions about AAC by being informed advocates and applying the principles of evidence-based practice and performance measurement.

Amyotrophic Lateral Sclerosis (ALS): Stages

This resource describes the various stages of ALS/MND written in terms that should be easily understood by PALS and family members. Each stage is written to identify the major changes to speech and communication that can be expected. No two individuals experience the same changes or move through the stages at the same rate. Your experience with ALS/MND is dependent upon many factors that should be discussed with your doctor and other health care team members. Links to other resources that provide a broader and/or medical description of the various stages may be found on the ALS Team Resources page. Not all PALS are diagnosed at Stage 1. In fact, many PALS don’t have the diagnosis confirmed by a neurologist until later stages. Hopefully, many other ALS/MND team members will find the information presented here useful.

Stage 1
Normal Speech Progress

Speech, language, reading, and writing may not be affected in Stage 1. Usually the speaker and listeners do not notice any changes in speaking rate, articulation, or loudness. However, don’t hesitate to ask your ALS/MND team to explain the changes you can expect to occur to your speech and communication.

You should receive information about the characteristic changes to communication for the different stages and possible intervention or compensatory strategies recommended for each stage. You and your family need to be aware of critical indicators that suggest a change in the treatment strategy.

You will want to start to learn about augmentative and alternative communication (AAC) strategies as well as resources to learn more about AAC options. Start to become familiar with the terminology. ALS/MND-related Internet resources and listservs are a good place to start to read about and share experiences with other PALS.

Ask about:
· Local support groups.
· The possibility of voice banking.

Stage 2
Detectable Speech Disturbance

Changes in your speech are now apparent and may be more pronounced with stress or fatigue. Mild articulation problems may be present. Speech, however, remains easy to understand, although voice quality may be harsh or breathy.

Your speech-language pathologist (SLP) will be measuring your speech rate to support clinical decisions. Many speakers will start to compensate unconsciously for articulatory or respiratory difficulties by decreasing speaking rate and the length of breath groups. You will want to discuss changes to your speech with the SLP along with recommendations for specific compensatory strategies. You should be discussing ways to use and conserve your energy. Learn your energy levels and save your energy for when it is needed. Clinical evidence indicates the elimination of all strengthening exercises, including tongue and lip exercises, since this type of treatment has not been proven beneficial. Instead, focus your energy on enjoyable activities.

At this point, you should determine if your SLP has the required AAC knowledge and skills and uses scientific AAC methods in AAC assessment and intervention AND has experience with funding avenues for SGDs (speech generating devices) specific to ALS/MND. If any of this is missing, then ask your team for a referral to an SLP who does have the required knowledge, skills, and experience. (Note: The experience history alone of the SLP does not necessarily lead to the most effective results.) Don’t be embarrassed to ask questions or go for a second opinion. Decisions and actions taken at earlier stages of ALS/MND impact the quality of life experienced at later stages.

Ask your SLP to provide you with:
· Ways to make your speech more understandable
· Ways to enhance your written and verbal communication
· Planning and preparation for further changes in communication
· Resources on preparing for high technology devices for verbal and/or written communication

Important tip: Although your speech and handwriting are still functional for communication, starting to explore high technology options is in your best interest. Now is the time to try different AAC systems so you can discuss performance, preferences, and options with your ALS/MND team.

Reminder: AAC supplements your speech; it does not replace it. You are in charge of deciding when, where, and with whom you want to use the various AAC strategies you have chosen.

Stage 3
Reduction in Speech Intelligibility

You will continue to experience further difficulty with people understanding your speech. At some point, communication is so difficult that speakers are no longer understood. You will need to continue to use compensatory strategies to maintain functional communication such as facial expressions, gestures, and writing systems. Your SLP will continue to monitor your speaking rate and discuss more ways to enhance your communication, which may include:
· Teaching techniques to resolve communication breakdowns such as providing partners with contextual information.
· Speaking in short standard grammatical utterances.
· Learning to use low technology strategies (writing, letter boards, palatal lift, voice amplifier).
· Learning about high technology devices and their performance characteristics and exploring features of technology.
· Making decisions about the type of AAC you want.

Important tip: If you haven’t already started an initial AAC assessment, the formal AAC assessment with appropriate specialists should be initiated at this time. Clinical evidence indicates that when speaking rate is 50% or less, AAC assessment and intervention is warranted. You will need to consider an AAC system or speech generating device (SGD) that can be customized to meet your changing needs. Understanding the funding options is imperative. Although you may still be able to use your hands to select keys on a device, remember to discuss and try alternative access methods. Experiencing and learning about alternative access methods now helps to avoid frustrations later.

Stage 4
Use of Augmentative and Alternative Communication (AAC)

Natural speech is generally not functional to meet all your communication needs. Your speech may be limited to highly predictable messages and familiar responses, greetings, and interjections. When natural speech is not effective, use of AAC strategies will supplement your communication. Your ALS team will provide you and your communication partners with information and resources about your AAC strategies. These AAC strategies will likely consist of:

· Your natural speech, gestures, and facial expressions
· Low technology systems to mediate simple communication with familiar partners such as writing key words, pointing to letters on a board.
· A high technology system (speech generating device) for a wide range of communication needs.

If it is difficult for you to use the device with your fingers, different options are available and should be investigated. Current technology is available for alternative methods to access an SGD along with features to monitor your performance and make changes when needed. No matter how limited motor skills become, a skilled ALS/MND specialist can provide you with options to continue to access your technology and maintain effective communication.

Stage 5
No Functional Speech

Speakers with advanced bulbar ALS lose speech function. Your ALS/MND team can help provide information and ways to modify and alter your communication system to meet your changing needs. The ways you use your AAC strategies will change based on the time of day, your position, communication partners, and the disease progression.

The most effective AAC systems allow you to communicate through the course of the disease. You will experience the benefits of starting the process of exploring AAC options early and using evidence to guide your decisions. If you were not able to learn the technology earlier, a skilled ALS/MND team can still recommend a SGD that will allow you to continue to communicate as effectively as possible. Use of a variety of strategies including low-tech boards, eye gaze systems, and SDGs allow you to engage in interactive communication with family, friends, and health care providers.

PALS’ Communication Bill of Rights

What are PALS’ rights?

As a person with ALS (PALS), you should expect certain standards and conduct from your ALS team. These are your “rights.” For example, all PALS have the right to ask about the services and supports they are receiving, and about the people who are members of the team.

Will there be things that I must do as a team member?

Yes, there also are things that other team members are counting on you to do as a partner in your own communication program planning. These are “responsibilities” that you have to yourself and to the professionals working with you. For example, your ALS team is counting on you to be as involved as you can, review information about augmentative and alternative communication (AAC), make decisions about your plan, ask questions, etc.

What are your “rights”?

You are a partner in your own communication program. Therefore, you have a right to:

Be provided with the supports and services that will result in the most effective communication possible through the course of the disease.
Be informed about the status of your speech and communication skills and be involved in planning your communication strategies and intervention.
Ask for and to know the members of your ALS team, their roles on the team, and their experience with PALS and AAC strategies and devices.
Ask for and have explained the evidence that is being used to guide the decision-making process for AAC strategies and systems.
Be informed about your performance, the performance differences among the various AAC systems, and the performance of other PALS using AAC systems.
Ask for names of PALS who are using AAC systems to contact for their opinion and perspectives about AAC recommendations and intervention options.
Expect that before making a recommendation for any AAC system or starting any intervention, your team must have your “informed consent.” This means that the details – such as your status, intervention options, factors influencing your communication, goals, and treatment plan – will be talked over with you.
Refuse any recommendation or procedure if you so choose. If you feel you must make these choices, your team asks that you talk with someone to explain the consequences.
Seek advice from another professional or get a second opinion.
Consent or decline to be in any research project that is proposed to you, and to have someone fully explain the project to you before you decide to sign a consent form.
Confidentiality.
Your services and your records should be kept private. Therefore, you can expect:
That any assessment, treatment, consult, or talk about your services will be held confidential.
Your records are private and confidential, except as allowed by law. You can expect that your records will not be released to those not involved on your team unless you permit this in writing.
All PALS have equal rights.

Therefore you can expect: To be free from discrimination on the basis of race, color, religion, creed, age, sex, national origin or ancestry, marital status, sexual preference, or any other legally protected characteristic.

Other Resources

1. The AAC Consumer Checklist: This set of questions may be used to help guide AAC consumers in their evaluation of services being provided by AAC professionals:  Pdf–(The AAC Consumer Checklist)                          
2. The ALS Association: http://www.alsa.org/
3. The Muscular Dystrophy Association: http://mdausa.org/