Written September 2021 – As we enter the fall, farmers markets fill with a variety of colors, textures, and flavors of the season’s harvest. Each crop required its own optimal combination of nutrients in the soil, sun, temperature, water, and protection from pests to thrive. Living well with ALS and caring for pALS also requires an individualized mix of care and attention, but can often feel like planting mystery seeds in unpredictable weather. Despite the uncertainties about the changes with ALS, there are some universal skills to nurture throughout any point of the ALS journey.
Foster a Growth Mindset: Good communication and fostering quality connections with others are skills. While acknowledging the devastation that accompanies the decline or loss of speech with ALS, you can always improve the skill of communication. PALS who develop their communication skills often find new ways of participating in meaningful activities, including time with family and friends, supporting other pALS, advocacy, spirituality, and making new connections, through creativity, technology, and advocating for their needs.
Be Proactive: This process of improving and adapting communication skills takes time and effort and is often easier to accomplish by learning about the available tools even when they are not needed today. Those who choose to digitally preserve their voices using voice and/or message banking will have the best results by starting sooner. Communication equipment can also take time to acquire and learn to use. Just like we buy insurance with the hope of not having to use it, it’s okay to maintain hope that speech will be preserved while still taking the steps to be prepared.
Tend the Seeds of Change: Facing potential or actual decline and loss of speech is severely challenging. Especially for those of us supporting pALS, keeping in mind that repeated opportunities to learn and be exposed to information with compassion is important in helping pALS take the necessary next steps. For pALS, identifying the best way you learn and seeking opportunities to revisit difficult or confusing information may make things a bit easier.
Understand Symbiosis: Though the burdens of communication challenges often fall on the pALS, communication is multi-directional. Communication partners and the world at large also have the responsibility of adopting the principles of good, attentive communication, slowing down, and being inclusive of the needs of those with communication disabilities.
What skills do you think are necessary to communicate well with ALS? Share your ideas with us in the comments or on our Facebook page. For patients of the Susan Mast ALS Foundation interested in assistance with speech and communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or firstname.lastname@example.org.