Communication Tools and Information

As ALS progresses, communication can become increasingly challenging for people with the disease. This can be incredibly frustrating for both the caregiver and the person with ALS. Here’s a comprehensive list of resources with descriptions and links to help caregivers facilitate communication and maintain connection:

Low-Tech Communication Aids:

• Alphabet boards and communication charts: These physical boards display letters, words, and phrases that the person with ALS can point to or use a head pointer to indicate their message. They’re a simple and readily available option for basic communication. Here’s a link to a printable communication chart you can get started with: Free Printable Communication Board: https://lesturnerals.org/als-communication-guide/.
• Eye gaze boards: Similar to communication charts, but designed for use with eye movements. These boards can be helpful for people with limited hand mobility.

High-Tech Communication Aids:

• Speech-generating devices (SGDs): These electronic devices are a lifesaver for many people with ALS. They allow users to communicate by using synthesized speech to express words and phrases chosen from a screen or keyboard. The ALS Association offers a helpful guide on Speech Generating Devices: ALS Association – Speech Generating Devices: https://www.youralsguide.com/communication.html.
• Augmentative and Alternative Communication (AAC) apps: Many mobile apps offer picture-based communication, text-to-speech conversion, and other features for people with communication challenges. Here are links to explore AAC apps in both the App Store and Google Play:
  • Link to The App Store – AAC apps: https://apps.apple.com/us/app-bundle/aac-essentials/id923988203
  • Link to Google Play – AAC apps: https://getgoally.com/apps-for-kids-with-special-needs/aac-app-for-kids/
• Eye gaze technology: Advanced systems allow users to control computers, including communication software, through eye movements. While more expensive, these systems can be a valuable tool for those who have lost all other means of communication.

Additional Resources:

• The ALS Association: They are a fantastic resource for all things ALS, including communication. Their website offers a wealth of information on various communication aids for ALS patients, including videos and helpful guides: ALS Association – Communication: https://www.als.org/navigating-als/living-with-als/therapies-care/augmentative-alternative-communication.
• The American Speech-Language-Hearing Association (ASHA): This organization provides information on selecting and using AAC tools for individuals with communication needs: American Speech-Language-Hearing Association – AAC: https://www.asha.org/practice-portal/professional-issues/augmentative-and-alternative-communication/.
• The Motor Neurone Disease Association (MNDA): While based in the UK, this organization has a wealth of information on ALS (also known as Motor Neurone Disease) including a section on speech therapy and communication: MND Association – Speech Therapy and Communication: https://www.als-mnd.org/support-for-pals-cals/clinical-care/speech-therapy-and-communication/.

Tips for Effective Communication:

• Be patient and allow extra time for communication. People with ALS may take longer to process information and respond.
• Focus on non-verbal cues like facial expressions and body language. Pay attention to sighs, frowns, or smiles to understand their needs and feelings.
• Break down complex topics into smaller, easier-to-understand parts. Use simple sentences and avoid jargon.
• Maintain eye contact and speak in a clear, slow voice. Enunciate clearly and avoid mumbling.
• Validate their feelings and emotions. Let them know you understand their frustration and are there to support them.

Remember, communication is a two-way street. By utilizing these tools and techniques, caregivers can ensure their loved ones with ALS continue to feel connected, valued, and heard.