Designing an Alternative Communication System for Dysarthria in Its Initial Stage in Amyotrophic Lateral Sclerosis (ALS)

2019 ◽  
pp. 309-316
Author(s):  
Daniel Solano Cobos ◽  
Danilo Saravia Vargas
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Communication System ◽  
Alternative Communication ◽  
Initial Stage ◽  
Lateral Sclerosis

“My World Has Expanded Even Though I'm Stuck at Home”: Experiences of Individuals With Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication and Social Media

2015 ◽  
Vol 24 (4) ◽  
pp. 680-695 ◽  
Author(s):  
Jessica Caron ◽  
Janice Light
Keyword(s):  
Social Media ◽  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Future Research ◽  
Loss Of Function ◽  
Alternative Communication ◽  
Communication Modes ◽  
Communication Needs ◽  
Use Of Social Media ◽  
Lateral Sclerosis

PurposeThis study aimed to expand the current understanding of how persons with amyotrophic lateral sclerosis (pALS) use augmentative and alternative communication and social media to address their communication needs.MethodAn online focus group was used to investigate the experiences of 9 pALS who use augmentative and alternative communication and social media. Questions posed to the group related to (a) current use of social media, (b) advantages of social media, (c) barriers to independent use, (d) supports to independent use, and (e) recommendations for developers, policy makers, and other pALS.ResultsParticipants primarily reported that use of social media was a beneficial tool that provided increased communication opportunities, connections to communication partners, and networks of support. Specific results are discussed with reference to the research as well as implications for practice and recommendations for future research.ConclusionsAs individuals with ALS experience loss of function, some communication modes may no longer be viable. Providing access to different modes of communication, including social media, can allow independence, participation and better quality of life.

Evidence for a protective role of the CX3CL1/CX3CR1 axis in a model of amyotrophic lateral sclerosis

2019 ◽  
Vol 400 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Chang Liu ◽  
Kun Hong ◽  
Huifang Chen ◽  
Yanping Niu ◽  
Weisong Duan ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Communication System ◽  
Microglial Activation ◽  
Neuronal Cell ◽  
Cell Loss ◽  
Degradation Pathway ◽  
Neuroprotective Effects ◽  
End Stage ◽  
Lateral Sclerosis

Abstract Aberrant microglial activation and neuroinflammation is a pathological hallmark of amyotrophic lateral sclerosis (ALS). Fractalkine (CX3CL1) is mostly expressed on neuronal cells. The fractalkine receptor (CX3CR1) is predominantly expressed on microglia. Many progressive neuroinflammatory disorders show disruption of the CX3CL1/CX3CR1 communication system. But the exact role of the CX3CL1/CX3CR1 in ALS pathology remains unknown. F1 nontransgenic/CX3CR1+/− females were bred with SOD1G93A/CX3CR1+/− males to produce F2 SOD1G93A/CX3CR1−/−, SOD1G93A/CX3CR1+/+. We analyzed end-stage (ES) SOD1G93A/CX3CR1−/− mice and progression-matched SOD1G93A/CX3CR1+/+ mice. Our study showed that the male SOD1G93A/CX3CR1−/− mice died sooner than male SOD1G93A/CX3CR1+/+ mice. In SOD1G93A/CX3CR1−/− mice demonstrated more neuronal cell loss, more microglial activation and exacerbated SOD1 aggregation at the end-stage of ALS. The NF-κB pathway was activated; the autophagy-lysosome degradation pathway and the autophagosome maturation were impaired. Our results indicated that the absence of CX3CR1/CX3CL1 signaling in the central nervous system (CNS) may worsen neurodegeneration. The CX3CL1/CX3CR1 communication system has anti-inflammatory and neuroprotective effects and plays an important role in maintaining autophagy activity. This effort may lead to new therapeutic strategies for neuroprotection and provide a therapeutic target for ALS patients.

Augmentative and Alternative Communication Assessment in Adults With Amyotrophic Lateral Sclerosis: Results of Semi-Structured Interviews

2021 ◽  
pp. 152574012110171
Author(s):  
Miechelle McKelvey ◽  
Kristy S. E. Weissling ◽  
Shelley K. Lund ◽  
Wendy Quach ◽  
Aimee Dietz
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Assessment Process ◽  
Speech Language Pathology ◽  
Alternative Communication ◽  
Structured Interviews ◽  
Communication Assessment ◽  
Language Pathology ◽  
Method Of Assessment ◽  
Lateral Sclerosis

This phenomenological qualitative study explored how eight speech-language pathology specialists in augmentative and alternative communication (AAC) (who self-identified as adult-focused) would approach the AAC assessment process when presented with a case study of an adult with amyotrophic lateral sclerosis (ALS). The general research questions were (a) What areas are assessed by AAC specialists evaluating individuals with ALS and (b) How do specialists evaluate the areas identified. In all, four themes emerged: (a) Area of Assessment, (b) Method of Assessment, (c) Patient Education, and (d) Decision Criteria. These results support authoritative models of AAC assessment. AAC assessment is a complex task and understanding the behaviors of specialists, as outlined in this article, may be a first step in assisting general practice SLPs to complete AAC assessments for individuals with ALS with greater confidence and comfort.

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