Connections provide a sense of belonging in life with ALS

The value in seeking out people who are walking a similar path

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
main graphic for

Eighteen years ago when expecting my daughter, I decided to become a stay-at-home mom. Mothering a newborn was a joyful season, but it was also exhausting and isolating. Another new mom in my community who’d experienced that same isolation after leaving the workforce started a family club that offered an online forum, a stroller-walking group, and play groups.

The play groups were divided by age. My daughter and I joined four other moms and their babies. The babies were too young to interact with one another, so the group was really for the moms. We’d meet at someone’s home or a local park where our babies lay on their blankets while we chatted. We found connection with others who were at the same life stage.

As humans, we’re always searching for our tribes, and we connect with people in different ways, whether it’s through a similar worldview, common interests, or shared experiences. These connections provide a sense of belonging.

Recommended Reading
A RISK dial is turned toward high.

Polygenic scoring system may help to predict ALS risk

I connect on some level with most other moms who have children around the same ages as mine. Our teenagers are on the cusp of adulthood, and we bond over joys and losses as we guide them through this transitional phase.

I connect with old friends who share cherished memories. Some of these people will be lifelong friends, as they were present during important milestones in my life, such as when I met and married my husband, Todd, or when I had my children.

Because I’ve experienced grief and loss for more than a decade due to Todd’s ALS, I also connect with others who’ve endured suffering. I share a common bond with those who have experienced the harsh realities of the world.

Todd was diagnosed with ALS when our daughter was just 4 years old and our son was not yet 1. I had many concerns for my children’s emotional well-being, and I wanted support, but it was difficult to find connections with others in that rare intersection of living with a progressive, terminal illness while raising young children.

In our rural community, few people have had the disease, and most of them were older. None had young kids. Once I attended a local spousal caregiver group, which wasn’t specific to ALS, and although I felt a connection with the other spouses there — because we were all dealing with tough situations — I was the only one in my age group.

Most of my ALS connections are online. I participate in a number of ALS Facebook groups, some of which are open to anyone affected by the disease, while others are for specific subgroups. I am part of one that is open only to spousal caregivers. However, even in this group, experiences vary significantly. A few of us have been living with ALS for many years, and although we’re grateful for the time we’ve had, chronic stress and grief have taken their toll.

I started another group for spousal caregivers with young children. Raising kids while caring for a paralyzed and terminally ill spouse is not a common circumstance, so it’s comforting to know that I’m not the only one facing these challenges.

Those who have young children and a decade-plus-long journey with the disease are even rarer. Last week, I came across another mom whose kids were also under 5 when her husband was diagnosed, and we’ve both been at this for more than a decade. We shared the sadness we feel about ALS being our kids’ normal.

Connections provide support and a sense of belonging.

How do you stay connected? Please share in the comments below. 

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.


Juliet Taylor avatar

Juliet Taylor

I love this column, Kristin. You are right that it's so important. Connections within this communuty are critical; I am glad to hear you have found your tribe. Thank you for sharing these thoughts.


Leave a comment

Fill in the required fields to post. Your email address will not be published.