ALS makes it hard for my husband to participate in group conversation
Todd's weakened voice often can't be heard at large gatherings
“I didn’t realize how weak my voice was until I was in a room full of chatter and background noise,” my husband, Todd, said after we had a stream of visitors for the past month and a half.
At the end of May, many of my husband’s extended family came for our daughter’s high school graduation, and we had a party with scores of other guests. In mid-June, my brother and nieces arrived, and then a week later my other brother and another niece came. They left at the end of June, and we had a couple free days until friends came for the Fourth of July weekend.
It’s nice when people visit because it’s too hard for Todd to leave our home. He has ALS and needs a wheelchair and a noninvasive ventilator, but he can forget how disabled he is in the controlled environment we set up for him, using a computer system with accessible technology in his air-conditioned office.
All the company, however, has made us realize how much the disease has progressed.
Communication challenges
When it’s just our family or a single visitor, Todd can still join the conversation while his ventilator keeps his lungs inflated. He can even say a few words during a meal without his ventilator, as long as we listen for when he has something to say and stop talking long enough for him to say it.
But in a large group, he can’t be heard well enough to participate meaningfully in any conversation. Even if I or someone else notices he’s trying to speak, and we say, “Todd is saying something,” the room often doesn’t get quiet enough to hear him. Or by the point people are listening, the moment has passed for his comment to be insightful or funny.
Sometimes Todd will say something during a pause in the conversation, only to be interrupted by somebody on the other side of the room who couldn’t possibly have heard him.
It’s hard to see the disappointment on his face. When he was healthy, he was often at the center of lively discussions. He would start the group down a trail of a new topic or punctuate moments with jokes.
On social media, other caregivers express similar frustrations from their loved ones with ALS who use assistive communication devices, like eye-gaze technology. Their speech is often too delayed and stilted to be effective in groups of people. Todd still has the use of his voice; it’s just very soft.
Todd also gets frustrated when I’m feeding him in a group of people, even if he’s not trying to say anything beyond what he wants for his next bite. I see his lips move, but I can’t make out what he’s saying. When there’s a lot of background noise, I misinterpret whether he wants another bite of his hamburger or a drink of water.
Several of Todd’s family members have hearing problems, and Todd was saddened that he could no longer banter with them. Because of aged ears, partial deafness, and tinnitus, they speak loudly, and that makes it even more difficult for Todd to be heard. Before his family’s visits, he’d managed to have a few conversations with his siblings and mother over the phone. But he wanted to take time during one visit to catch up with his nephews.
I texted them, saying Todd would really like to talk with them but finds it hard in a group. They took the time to have one-on-one conversations with him, updating him on their careers and lives.
In spite of his difficulty being heard, Todd still likes having company. It’s good for his spirit to be with friends and family, but now he needs to rest and let his diaphragm muscles recover after so much use.
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