Communication Support for People with ALS

Abstract

Almost all people with amyotrophic lateral sclerosis (ALS) experience a motor speech disorder, such as dysarthria, as the disease progresses. At some point, 80 to 95% of people with ALS are unable to meet their daily communication needs using natural speech. Unfortunately, once intelligibility begins to decrease, speech performance often deteriorates so rapidly that there is little time to implement an appropriate augmentative and alternative communication (AAC) intervention; therefore, appropriate timing of referral for AAC assessment and intervention continues to be a most important clinical decision-making issue. AAC acceptance and use have increased considerably during the past decade. Many people use AAC until within a few weeks of their deaths.

Motor neuron disease: the impact of decreased speech intelligibility on marital communication

“…As the value of supporting communication for personal and medical care, community involvement, social interaction and maintaining close marital communication cannot be underestimated, the couple should be provided with appropriate information and support by healthcare professionals. 19 Guidelines for intervention that address the communication needs of persons with MND and their family include: 9 • Appropriate timing of referral to an AAC specialist or speech therapist for screening, assessment, intervention and education. This is one of the most important clinical decisions that are essential to ensure that when residual speech is no longer effective, AAC strategies are already in place.…”

“…This allows gradual familiarisation with the AAC strategies. 9 • Speech intervention, that includes oral exercises to improve strength and mobility, should be discouraged.…”

“…14 In light of the significant changes in the motor abilities of people with MND, it is imperative that AAC strategies meet the changing physical needs as the disease progresses. 9 Therefore, it is important that the recommended strategies support multiple, adjustable access methods that allow them to transition from hand access to scanning and eye pointing or tracking, for example. 9 Given its prominence over physical abilities and function, communication is essential for the human experience and may be the single most important aspect for personal well-being.…”

“…9 Therefore, it is important that the recommended strategies support multiple, adjustable access methods that allow them to transition from hand access to scanning and eye pointing or tracking, for example. 9 Given its prominence over physical abilities and function, communication is essential for the human experience and may be the single most important aspect for personal well-being. 11 As chronic illness is a dyadic affair, marriage will predictably be affected by the diagnosis of MND.…”

Coherence and Phase Locking Disruption in Electromyograms of Patients with Amyotrophic Lateral Sclerosis

“…ATs for communication are commonly based on electronic devices and typing tasks (considering the use of textto-speech technologies), either on a physical keyboard or a virtual keyboard accessed via touchscreen. Due to the neurodegenerative characteristics, it is important to follow symptoms of progression in upper limb motor control to identify periods to adapt or introduce ATs, aiming at augmenting users' functionality in communication (Beukelman, 2011;Bongioanni, 2012).…”