Pulling happy memories into the present moment

With ALS, precious fellowship with friends is often a luxury

Kristin Neva avatar

by Kristin Neva |

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While in town the other day, I ran into an old friend. My husband, Todd, and I had gotten to know her and her husband when they first started attending our church. We had invited them over for dinner along with a few other families.

Then we met weekly with them and a small group of other couples, but we eventually left the group after it became too stressful to get Todd out of the house for an evening. He has ALS and uses a power wheelchair, and it was a hassle to set up ramps to get him into the host’s house, especially in the winter.

“I’ve been thinking about you lately,” my friend said. “How is Todd doing?”

“He’s hanging in there.” I looked down at my phone to see if Todd had responded to my text message asking if he was OK.

Todd had replied, “Pretty much; occasional rattle, but I’ve so far been able to clear on my own.”

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He was OK, but I felt too hurried and on edge to have much of a conversation. I explained my distracted state: On occasion, mucus builds up in Todd’s lungs, and he needs help coughing. We had just gotten through an episode, and Todd thought it was fine for me to leave him to run errands, but I was ready to rush home if he needed my help again.

We talked about getting together, and then, later that week, we made plans for her and her husband to join Todd and me for dinner at our house.

Todd and I used to invite people over for dinner frequently, but for more than a decade, he hasn’t been able to help me clean the house or prep food, and his care takes a lot of time. I haven’t had the energy to host much more than holiday gatherings or dinners with friends and family visiting from out of town. We used to occasionally go out with friends to a restaurant, but now Todd’s neck is weak and he is on noninvasive ventilation nearly 24/7. He doesn’t get out of the house except to go to medical appointments.

We’ve been feeling pretty isolated.

Apart from the physical difficulties, the thought of connecting with our peers sometimes feels daunting. We aren’t planning vacations, seeking career advancement, or dreaming about the future. We are just trying to survive. We do connect with other parents on the joys and challenges of raising children, but much of what Todd and I have to share is looking in the rearview mirror.

A few friends who’ve made an effort to come and see us know that Todd is homebound and I have a lot on my plate, and so we keep it simple. If we have lunch or dinner, we often get takeout.

For this dinner with our old friends, I made split pea soup, and our friends brought bread. Our evening was filled with enjoyable conversation. We talked about our kids, our travels, and how we met our spouses. We pulled some of our happy memories from the past into the present.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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