Speech and language therapy for SMA | mySMAteam

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A speech-language pathologist (SLP) can help people with spinal muscular atrophy (SMA) overcome problems with speech and swallowing that develop due to weakness in the tongue, throat, and respiratory muscles. They may teach strategies for safer swallowing, conserving breath while speaking, or using adaptive language techniques if communication becomes difficult.

SLPs are key members of a multidisciplinary team - including occupational and physical therapists - treating individuals with SMA. It’s important to meet with an SLP soon after diagnosis to prevent any delay in language skill development, or set a baseline for monitoring a person with SMA’s functioning over time.

What does it involve?
During the initial consult, an SLP may perform tests to evaluate swallowing and speaking. One common test, which involves taking X-rays while a person eats a barium-infused cookie, helps SLPs diagnose issues and prescribe the proper treatment plan.

Speech and language therapy treatments may include:

Language strategies. Slowing down speech by enunciating syllables, or pausing between words and phrases, is a strategy SLPs may use to improve communication in people with weak speaking muscles. Alphabet boards - which involve touching the first letter of the word spoken – may also be used to pace speech.

Vocalization. When articulating words is difficult, therapists may ask the person to voice sounds, such as using both sides of the tongue to make an “s” sound. Activating rib cage muscles when there isn’t enough breath to speak - which can involve blowing exercises - may provide respiratory support to help vocalization.

Augmentative and alternative communication devices (AAC). These are communication devices that improve, support, or replace speech and writing. They can range from a set of pictures to electronic speech systems. AAC also includes strategies families can use together for better communication. SLPs can evaluate the need for an AAC, and help integrate it into mobility equipment, if necessary.

AACs, and other tools, can help people with ventilators - or tracheostomies - communicate their needs. Ventilator settings may be adjusted to provide the upper airway flow needed for speech while maintaining adequate pressures for breathing. Speaking valves, such as the Passy-Muir valve, may also be used. The valve stops air from flowing out through a tracheostomy tube while a person is trying to speak.

Intended outcome
The goal of speech and language therapy is to facilitate communication for people who have difficulty speaking - or cannot speak at all - using a range of exercises and devices that strengthen speech muscles and are tailored to individual needs.

Literature reviews have found that the use of AAC devices for communication are feasible, useful, and safe. In a 2019 survey of families with children who have SMA type 1, respondents reported that AAC increased quality of life and improvements in communication.

A systematic review of 1,772 articles on the effectiveness of speech pathology interventions in adults with neuromuscular diseases discussed evidence that using the correct head position improves swallowing efficiency, but further research is needed.

It can be difficult to obtain insurance coverage for adult speech therapy or equipment. Insurers are more likely to cover children. School-based speech therapy services are typically provided free of charge.

Speech therapy may be complicated by respiratory support interventions.

For more details, visit:
1. Sorting Out Speech Services – Muscular Dystrophy Association
2. Speech, Language, and Swallowing/Feeding Services — Children’s Hospital of Pittsburgh
3. Augmentative and Alternative Communication — Gillette Children’s
4. The Feasibility, Utility, and Safety of Communication Interventions — American Speech-Learning-Hearing Association
5. Speech pathology interventions in patients with neuromuscular diseases: a systematic review. — International Journal of Phoniatrics, Speech Therapy and Communication Pathology
6. Involving a Speech Therapist in Your Child’s Treatment — Selective Mutism Association

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