Communication at Any Stage

Staying proactive about communication with ALS can give you choices for how you want to stay connected with others and express yourself. This post gives suggestions for things to consider depending on if or how your talking has been affected by ALS. Tips for communication partners are listed at the end of each section. 

At any point, talk to your clinic SLP and team about concerns related to communication. They know your medical history and situation best. Depending on your medical status, goals, concerns, and insurance, you may be eligible for outpatient SLP appointments or home health SLP in addition to clinic visits as well. 

Additional links to resources and ideas for communication can be found here: Speech & Communication Resources – Susan Mast ALS Foundation 

Jump to: 

No or Minimal Speech/Voice Changes 

Take a moment to reflect on your communication style and relationships. The possibility of communication changes often brings up a lot of complicated feelings for many people. However, acknowledging your concerns, seeking support, and identifying your priorities can help you to cope and stay focused on your goals. Talk to your clinic SLP about any concerns you may have about the impact of ALS on communication and ask about ways to optimize your speech/voice function or to digitally preserve your voice with voice and message banking. Read more on digital voice preservation here. 

Communication partners should start to familiarize themselves with the impact of ALS on communication. Communication partners and may also reflect on their own communication styles.  Identify areas of strength and need for being a supportive communicator to a pALS with a communication disability. Aim to practice mindful, open, and distraction-free communication interactions. Offer to help if the pALS is starting voice and message banking. 

Starting to Notice Speech/Voice Changes 

Continue to ask for support from your clinic SLP on the above and learn about strategies to conserve energy. One of these strategies may be using a personal voice amplifier, which boosts the loudness of your speech. This can be helpful with reducing fatigue with talking and particularly useful around background noise or multiple speakers. Many are available for purchase online or contact a SMAF care services manager if you are interested in one from our loan closet. 

Becoming familiar with AAC tools and strategies used by those with communication disabilities to connect with others can help you to stay proactive. If you use a smartphone or tablet, looking at free or low-cost apps for communication can help you become familiar with AAC. Communication aids should be custom-tailored to you, so having an awareness of the options out there can help you to get the best fit in the future. Check out the Communication Resources Guide for links to devices and apps. 

Consider Voice and Message Banking if you haven’t yet. The quality of the end product of voice preservation may be affected by any speech/voice changes you may be experiencing, but many pALS choose to make recordings at this stage.  

PALS and their key communication partners may identify the pALS preferences related to communication. Communication partners can work on developing sensitivity to energy conservation strategies by having conversations in quiet areas and face-to-face whenever possible or offering opportunities to rest or take breaks.  

Need to Repeat to Be Understood 

Your clinic SLP may have strategies and tools to help reduce and repair communication breakdowns and may refer you to an AAC or speech generating device evaluation if you haven’t done one already.  

Be aware that speech generating devices paid for by insurance can often take weeks to months to get. Medicare covers 80% of the cost of speech generating devices and a mount, and typically will not cover devices on hospice or in a nursing facility. The timing of referrals and evaluations for these insurance-funded devices depends on a number of factors like speech symptoms, overall ALS symptoms, insurance coverage, pALS’ readiness, availability of appointments, and more. 

If you are unable to get a device you need through insurance or if your copay is a barrier, a communication loan closet may be able to help. Make sure that you know how to keep your data secure and how the device is cleared between users when borrowing a device. Your SLP may be aware of loaner devices that are available locally, or you may contact a support organization such as Team Gleason, ALS of Michigan, or Bridging Voice

Some pALS find that AAC tools that are readily available for purchase meet their communication needs. These include smartphones or tablets such as Apple iPads and Windows Surface loaded with a communication app, then adapted with specialized styluses, head/motion sensitive mouses, switches, and even eye trackers. Your SLP or the organizations mentioned above may be able to help you to explore these options as well. 

Think ahead about effective communication during emergencies. Have a plan for how to call for help and communicate with emergency responders. This may mean exploring medical alert options, finding out how to register your information with local fire departments and emergency personnel, or signing up for Smart911.  

Communication partners can honor the energy and effort expended by pALS to communicate at this stage by allowing sufficient time and space to listen. Getting to know each pALS’ own preferences and priorities regarding communication can help create a comfortable space to connect. Be truthful with feedback about when a part of a message is not understood by restating the part of the phrase that you understood before asking for clarification. Learn about some of the common communication strategies used by pALS to be able to offer help. Embrace all forms of communication! 
Communicates with Speech and AAC 

Your SLP may help you to learn how to use an AAC device or app, adapt to changes in communication, and find ways to be more efficient with AAC. Depending on your area, ALS symptoms, other health needs, insurance, and hospice-status, you may be able to request help from an SLP through outpatient appointments in addition to clinic visits, home health, or at your nursing facility if you reside in one. The organizations mentioned in the previous sections may also continue to be a resource to you. 

PALS who have their own AAC device funded by insurance may be able to get help from the AAC device company for basic operation/features, mounting, and technical support. AAC device companies usually have a representative assigned by region/location. Contact the device company to get connected to your rep. 

Online and phone resources for technical support are usually freely available for AAC device users, regardless of if they own it (self-pay or insurance-funded) or if it is borrowed from a loan closet. Many device websites have help videos and articles that walk users through frequently used functions and procedures. 

It’s great to have multiple forms of AAC for different situations. Familiarize yourself with tools that don’t require technology for easy access to AAC and to have as a backup method to tech. There are links to printable and DIY communication boards/books on our Communication Resource Guide

Communication partners can be supportive and open-minded about various forms of communication. It is normal for pALS and communication partners to mourn the way that communication looked and sounded before ALS. However, openness to all forms of communication and learning the preferences and needs of the pALS is supportive of ongoing connection. When an AAC tool is used in conversation, remember to maintain eye contact and connection with the AAC user/pALS. The timing and flow of conversation usually changes with AAC. Allow for enough time to communicate respectfully with the pALS. Ask the pALS what their preferences are regarding the extra time they may need to form messages on AAC, and if unsure, err on the side of waiting quietly without predicting or looking over their shoulder. 

Full-time AAC user 

You have a right to accessible and effective communication! Work with your SLP and communication partners to identify ways to make sure that all of your communication needs are met. Ensure that you are able to communicate about any topic, from basic needs and feelings to goals of care and end-of-life concerns. If you use a high tech AAC device, you may be able to access tools like your phone, email, social media, the internet, and more on your device. Strategies such as word prediction and abbreviation expansion may help you to communicate faster.  

Depending on your energy levels or other ALS symptoms, you may notice a change in your communication preferences and style. Find ways to invite connection with others, such as by asking loved ones to show you photos and tell stories about their lives, reminisce about memories, or to sit together with you. Program messages into your device that lets others know how you prefer to communicate. 

Communication partners should remember that AAC is a lifeline for communication for the pALS. Caregivers should make sure that the pALS always has access to their communication method. Full communication includes all topics that a pALS may want or need to express. This may mean that the communication partner has to be open to the pALS using AAC to express feelings, preferences, or ideas that are difficult for the partner to hear. Supporting full access to communication is essential for respecting the pALS’ rights and autonomy. 

Additional Resources 

Note that the Susan Mast ALS Foundation will no longer have a speech language pathologist on staff and this post is presented for general informational purposes only. Jim’s Voice program updates are here. Please direct individual questions and concerns to your own medical team, which may include your neurologist, speech language pathologist, ALS clinic, physician, and other professionals. 

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