Being able to communicate clearly helps to define us as individuals; it gives us our personality, expresses our thoughts and creates relationships with friends and family. However, ALS often robs an individual of this distinctly human capability.
Lacking the ability to speak is often the ultimate form of isolation for a person living with ALS, especially if their mobility is impaired. At some later stages of ALS, expressing thoughts is the only form of communication and interaction with the outside world, no matter how it happens.
Additionally, not being able to hear a loved one’s voice and the absence of spontaneous conversation is equally as difficult. It takes a mutual understanding and patience with both parties involved in order to keep the lines of communication clear.
There are a number of devices, both low-tech and high-tech that can help keep your loved one in on the conversation, no matter how much muscle use is lost.
Losing Speech Ability
People with ALS may exhibit a loss or waning of speech in a variety of ways:
• Voice may become hoarse or raspy
• Words may become slurred
• Voice may become softer
• Talking may be tiring depending on respiratory function
• The person may become frustrated, depressed or irritable at the inability to be understood
Some tips for being an effective speaking partner when speech is difficult to understand
• Give the person full attention, with a focus on the face
• If you don’t understand something, ask the person to repeat it, or say it slower or louder
• Try rephrasing or repeating the words yourself
• Talk in a relatively quiet voice so that the person responding doesn’t feel as though they need to respond loudly, which can be fatiguing
• If you notice that the speech is becoming more and more slurred, encourage them to be quiet for a few minutes to regain composure and strength
After you notice a significant change in speech, more drastic measures may need to occur. At first, using an improvisational sign language, such as pointing or gesturing, may be sufficient for early stages. However, if speech continues to decline more rapidly, a speech-language pathologist may be of need. While the SLP may not be able to restore full speech capabilities, they will be able to offer advice and techniques that will help to mitigate fatigue and improve intelligibility.
Many individuals with ALS record their own voice, while they still can. These taped messages could be favorite stories or a simple message for family members. Living with ALS can be scary; however, the more you plan for the future and understand what to expect, the lines of communication will not have to be blurred.
