2004 Conference Proceedings

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COMMUNICATING WITH ALS: A CLINICAL PATHWAY FOR SERVICE DELIVERY

Presenter(s)
Juli Trautman, MS, CCC-SLP
Duke University Medical Center
DUMC 3887
Durham, NC 27710
Phone: 919-684-5417
Email: juli.trautman@duke.edu

Pat Ourand, MS, CCC-SLP
Associated Speech & Language Services, Inc.
100 E. Pennsylvania Avenue
Towson, MD 21286
Phone: 410-825-9445
Email: Pourand@aslsinc.com

ALS is a progressive neurological motor neuron disease. Although the disease has varied onsets to include spinal and/ or bulbar musculature, the disease often results in impaired speech and ultimately the inability to speak. There is no known cure for the disease; however there are many ways a multidisciplinary team can help manage the symptoms. Because of the degree of progression over a relatively short span of time, one of our main roles is to provide consistent support, education, and access to resources. In order for someone with ALS to be able to be successful using strategies, compensation and/ or technology they must have four critical components: preparation, motivation, ability and need. Through preparation, education, needs assessment and evaluation we can help match the type(s) of AAC with the person, to help them maintain participation in life.

The clinical pathway for ALS progression and communication involves five stages.

STAGE 1. Normal Speech Processes
STAGE 2. Detectable Speech Disturbance
STAGE 3. Behavioral Modifications
STAGE 4. Augmentative Communication Use
STAGE 5. Loss of Useful Speech

Throughout the first stage of the disease, many team members may be active in assessment, education, and providing support to include. Assessments may include: informal observation of speech function, oral motor exam, interview, and baseline measurements, such as the Sentence Intelligibility Test. Information is crucial at this stage to prepare the person with ALS for potential changes and options which can be helpful to maintain communication. The earlier people get information about what to expect, the more prepared and accepting they are, the more likely they will be able to use compensatory strategies and technology when it is needed. Connecting people with support groups, and providing additional resources for information and support is also important.

During the second stage, speech disturbances become noticeable. This may be the point at which the diagnosis of ALS is confirmed, if it hasn't yet been confirmed. It is important for any exercises of the speech musculature to be terminated, as it has been shown that exercises only further fatigue the muscle vs. restoring function. Education should continue in regard to expected disease progression related to functional communication. Information about the options available to make communication easier should also be discussed. It is important to be realistic about the technological options available and provide information not only about what technology can do, but also what it cannot do. Other education should include initial information about communication strategies for both the listener and speaker and education on energy conservation. Assessments may include many of the same assessments as in Stage 1, in addition to beginning a communication needs assessment of partners, environments and content.

Stage 3 begins when a speech disturbance is worsened to the point where behavioral modifications are needed. These modifications may include repetition, slowing rate, limiting when and where one speaks, etc. Our role is to further provide ideas and strategies to help them communicate most efficiently. Some "Tips for the Speaker" may include: rephrasing vs. repeating, speaking in shorter phrases, giving the topic before the message, speaking face to face, and spelling words that are misunderstood. Some "Tips for the Listener" may include: limiting distractions, giving full attention and encouraging writing, spelling or rephrasing. Other modifications that may be helpful at this stage include amplification, telephone modification, and topic boards. Further preparation and education about AAC options is important which may include showing technology and introducing them to other people with ALS who use AAC. It is important to monitor speaking rate and intelligibility throughout the course of the disease. Research has shown that once the speaking rate becomes 90-125 wpm (about 1/2 of normal), a persons intelligibility significantly declines in a short time period (in some cases < 2months). Once a person's speaking rate becomes 125 wpm a full AAC evaluation is needed.

Stage 4 is when AAC is needed to augment or serve as an alternative to verbal communication. A comprehensive AAC evaluation includes many team members, directly and/ or indirectly. These members may include the: client, family, communication partner(s), therapists (SLP, PT, OT, etc.), assistive technology specialist(s) (SLP, RE, OT, etc.), physician, vocational rehab, MDA/ALS representative. The goal of the evaluation is to improve communication with high and/or low technology tools.

The fifth stage is when a person no longer has any use of functional speech and therefore they rely solely on AAC to be an alternative for their verbal communication. Our role is to continue to support and educate them on ways to integrate AAC into their daily lives. As physical changes progress, modifications may also be needed. It is important to continually include family and communication partners in support and education as they are vital to the success of whatever AAC is used.

The continuum of communication across the course of the disease is dynamic. People with ALS CAN maintain participation in life through successful communication as long as the support, education and resources are available. It is our role to ensure this availability.


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