By Natsumi Asanuma, M.S., CCC-SLP
Think of the many tools we all use for communication. I’m typing this on a computer keyboard, texted my friends, called a patient on the phone, and took notes on a pad of paper with a pen. These days, there are countless tools available to support communication, and we are all more proficient with some more so than others.
We speech language pathologists (SLPs) often talk with people with ALS (pALS) about a broad range of tools called Alternative and Augmentative Communication (AAC). Many (though not all) pALS will experience changes in their natural speech or voice, and AAC encompasses tools and strategies to make communication as effective as possible for these pALS. Though some utilize speech generating devices or other tools to take the place of vocal communication when speech is not an effective option (the “alternative” in alternative and augmentative communication), there are many options in between to boost (or “augment”) your natural speech. AAC is not an all or nothing approach.
For those starting to notice changes in their voice, speech, or endurance with talking, first identifying your challenges and personal preferences or goals can help with identifying an augmentative communication plan.
Identifying the Challenge
Tools in the Augmentative Communication Toolkit
Guidance from a speech language pathologist that knows your situation well can be helpful for identifying the right tools for you, but here are some examples of augmentative communication methods. You may have even identified some of these tools on your own! Remember that these are new skills for you and likely your communication partner, and trial and error with practice can go a long way.
Though there is a chance of speech abilities changing with ALS, there is always hope of learning new communication skills. The Susan Mast ALS Foundation offers education on these strategies and more, as well as a communication loan closet that includes these quick access tools, through our Jim’s Voice Program. If you are registered with our Foundation and are interested in working with a speech language pathologist to learn more, please contact Natsumi at 616-622-3066 extension 4 or firstname.lastname@example.org.
By Pam VanVliet
The word support can mean many different things to pALS and caregivers living with ALS. From an equipment stand point, support means adaptive equipment that can help pALS move and live well with ALS. For example, when walking becomes challenging, a walker or power wheelchair. In the bathroom a sliding shower bench, hand grips and automatic soap dispenser for safely bathing, and a raised toilet seat with handles. As eating & drinking starts to become challenging, adaptive untensils and cups. It can also be helpful to change door handles from turn to lever.
Support also comes from family, friends and volunteers! Being aware of the needs of the family, walking the dog, yard work, house work, meals. For a caregiver the question “what can I do for you” can be overwhelming. Instead, look at what the caregiver needs and offer to help with that.
Support also comes from our community, recently a Schwan’s truck pulled up in front of my driveway. The man walked up with a bag of food and I told him I did not order anything. He asked if I was the ALS lady, and I said yes. He said he just wanted to help with food for our families and this was a personal donation from him.
What does support look like to you?
by Emily H. Brechting, Ph.D.
SMAF offers a number of support groups for our community. We provide groups for patients and family members to connect, groups for caregivers to come together with others who understand this role, and a grief group for those who’ve lost someone to ALS. Each of these groups makes it possible to spend time with others experiencing similar challenges and who understand the complexities of ALS.
I’m privileged to be a part of these groups as a facilitator for our grief group called Gather and as a guest for the other support groups. Each time I join a group, I thank the members for letting me into their space and allowing me to be with them. There is something so special about the honesty, sharing of stories, exchange of tips, and vital encouragement that takes place in each meeting.
Perhaps you have ideas about what a support group for ALS families might look like...doom and gloom, overwhelming sadness, or something along these lines. It’s true that tears do fall sometimes in these meetings but what always strike me most are the laughter and smiles.
Yes, you read that right. Laughter. Smiles. Sometimes those smiles are reserved. They might be tiny smiles of gratitude at being truly heard by the group. They might be small, knowing smiles accompanied by nodding to let the speaker know they are understood. Other times those smiles are expansive. Perhaps a member shared the news about a new grandbaby or someone is sharing about a recent vacation. There is genuine excitement to share about the recent joys of life and these groups share in one another’s pleasure.
And the laughter? It’s an absolute delight. Were you to listen in on a group, you’d hear a great deal of chuckling. It’s not uncommon for a member to share about a humorous scenario involving issues with assistive equipment, changes in function, or other intricacies involved in living with ALS. It usually starts with “You’re never going to believe this...” As the story unfolds, the group share a collective laugh at the improbable string of events or the creativity needed to resolve the issue. These are laughs of empathy, knowing, and understanding. Other times those chuckles blossom into full-blown laughter. It's hard to predict what will get the laughter rolling, but in those times, members are wiping away a different kind of tears. Those tears are valuable, just like tears of sadness, frustration, and grief. All of them are welcome at our support groups.
Susan Mast ALS Foundation