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Changes in speech are common with ALS and progress over time. Learning about what causes speech and voice changes and implementing timely strategies and proactive steps to take at the various stages of ALS will help you to maintain optimal communication.
Changes in Speech
ALS leads to speech problems when it attacks bulbar neurons. These are the nerve cells responsible for bringing messages from the lower parts of the brain (bulbar region) to the muscles that move the lips, tongue, soft palate (back of roof of mouth), jaw, and vocal folds (voice box). As nerves are lost to the disease, the muscles they control become weak and tight. This causes dysarthria – the term used to describe slow, effortful, slurred speech, and breathy or hoarse voice. Weakening lung muscles affect speech as well. Speaking may make you tired, especially later in the day. You may find yourself speaking in shorter sentences and that projecting your voice is difficult.
There is an important distinction between the dysarthria associated with ALS and the dysarthrias resulting from other conditions like a stroke. In ALS the muscles that are receiving signals from the brain must compensate for the muscles that are already weak. This means the functional muscles are doing extra work all the time to compensate and therefore, require more frequent and extended rest. In fact, rest can often help temporarily improve speech. Therapeutic oral exercises designed to strengthen muscles for people with other forms of dysarthria have not been demonstrated to improve speech for people with ALS. The movements required for speaking provide ample exercise. Stretch and massage may be recommended to reduce tightness or maintain range of movement.
Partnering with your Speech Therapist
Beginning work with a speech therapist (i.e. speech language pathologist or SLP) familiar with ALS at the earliest sign of speech or voice changes, and even prior to changes occurring, can be invaluable. As your abilities change, your speech therapist can help you to maintain or improve your communication. A speech therapist will make sure you have the tools and training to achieve each of these seven vital communication competencies throughout the progression of ALS. I can alert people in other rooms or outside the home when I have a need or emergency.
- I can use strategies that improve communication speed, success, and reduce fatigue (whether using speech or AAC).
- I can use a low-tech or rapid access communication system.
- I can produce voiced messages via speech, SGD, or TTS app.
- I can communicate with people not in my immediate environment (email, text, phone, social media, etc.)
- My communication partners and I can independently set up, customize, and use all of the elements of my communication system.
- I can describe a proactive strategy designed to prepare for typical changes in speech and/or computer access that I may experience.
It is essential though that you understand the abilities you can expect to maintain, and alert your therapist when updates in your system are needed.
Adapted from the ALS Functional Communication Scale, Roman 2014