I want to start by acknowledging that “the holidays” can be complicated, especially when living with ALS. This season of celebrations may look or feel very different for pALS and loved ones compared with years past. For those experiencing speech changes, gratitude for technology and supports that make connection possible and sadness or grief about speech changes may be present at the same time. With this in mind, how can we maximize connection and communication during the holidays?
Reflect on your goals
When you think of the holiday season, what stands out to you? Time with family and friends, traditions, spiritual and religious practices, giving to others, or a time of rest are some examples that might come to mind. What do you enjoy? What could you live without? Identifying your priorities for the season is a great place to start, in order to direct your time, energy, and effort toward a meaningful time.
Advocate for your needs up front
Whether you are spending the holidays with those you haven’t seen in a while or those close to you, sharing your communication (and other) needs ahead of time can help foster effective communication. This can take the form of an email or text before the gathering, a shared article on communication partner tips (this is a great resource), a conversation, or asking a caregiver or loved one to help advocate. Consider the following ideas to identify what is important to you or share this article with those you are celebrating with.
Reduce background noise
For many pALS, communication in noisy environments and group conversations can be particularly challenging. Reducing background noise can make speech less effortful and make it easier to concentrate when communicating with a speech device. When planning a gathering, select a quieter restaurant or space, turn off TVs and music, consider a fewer number of guests, and create a nook for one-on-one visiting. For those communicating with natural speech, a voice amplifier (available from our loan closet for SMAF pALS) can be particularly useful for parties. Speech device users may want to adjust their device volumes, consider if you are okay with communication partners looking at the device screen to read and hear messages, and turn on the partner window if your device has this feature.
Plan around food
Extra creativity might be warranted for holiday celebrations that are traditionally centered around food and drink. Shifting the focus of a gathering to the other senses of smell, vision, touch, and hearing can make it more inclusive to pALS who use feeding tubes or find communication difficult during mealtimes. Cozy matching pajamas, viewing holiday lights/decorations, warm fireplaces, fragrant candles, and favorite holidays tunes and movies can be enjoyed without food. (More ideas related to dysphagia and the holidays here.)
Prepare messages and mementos
For speech device users, pre-programmed messages can help conversations feel smoother. Try saving messages like holiday greetings or toasts, readings, updates from your life, jokes, and memories onto your speech device before the event or gathering. Mementos such as photos and videos, souvenirs, family ornaments and heirlooms, or art can also serve as visual aids that can also help support communication partners’ understanding dysarthric speech.
Reach out for support
Join us for our next educational session on December 1, 2022 at 1 pm on Zoom for a SMAF community discussion on how to prepare for a meaningful holiday season while living with ALS. Members of our SMAF community can contact speech language pathologist Natsumi at natsumi@susanmastals.org or 616-622-3066 ext. 4 for more assistance.