It’s Important to Share Our ALS Stories on Rare Disease Day

Kristin Neva avatar

by Kristin Neva |

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I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. I grieved the loss of our dreams of adventures that we would have — family vacations to national parks and growing old together.

I searched online and found a grief group at a local church, but when I called to find out more information, the facilitator told me the group was for people who were grieving a death. I was glad I didn’t yet fit that criteria, but I was left feeling alone.

A few weeks later, our ALS clinic connected me with another wife-caregiver who was a few years old than me. Her husband was diagnosed when he was 36, and they also had a baby boy at the time. They were a decade into the disease, and that phone call from her felt like a lifeline.

“I’m hoping Todd’s disease progresses as slowly as your husband’s, but I don’t want to spend the next 10 years grieving,” I told her.

“You learn to compartmentalize it,” she replied.

I talked with her about my struggle with faith.

“My faith isn’t what it should be,” she said, “but I must be getting strength from somewhere.”

We later met the couple at an ALS support group where they were presenting. He was in a wheelchair, and his neck drooped to one side. His speech was slurred, so she interpreted for him. They provided helpful information, but it was hard to witness a decade of ALS progression — even slow progression.

His condition painted a difficult picture of where we were heading. Given that Todd only had a weak arm at the time, and it was already affecting his abilities, it was difficult to fathom how far Todd’s condition had yet to deteriorate. I was scared for our future, yet I saw a glimmer of hope in their upbeat dispositions.

Even in the midst of his severe disability, they were coping. They had come to the ALS support group from their son’s baseball game, and he was still in his team uniform. The man was sunbaked, showing he had spent much time outdoors. They seemed enthused to connect with other people with ALS and share their experience.

Because ALS is so rare, I feel a kinship with everyone who is dealing with it, no matter their age, but I feel the strongest connection with those who are middle-aged like us. Because ALS is rare, and it’s even rarer to be diagnosed before age 45, there aren’t many people at our life stage who are dealing with this. I value my connections with people in similar situations.

Feb. 28 is designated as Rare Disease Day. It’s important that we share our stories, so others will know they are not alone.


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.


Josep Rof Rof avatar

Josep Rof Rof

La ELA existe, yo la padezco "estoy en lo mejor de un peor futuro" Abrazos queridos eláticos i/o a sus cuidadores Josep Rof Rof

Theresa Fraser avatar

Theresa Fraser

Thank you for sharing your story Kristin. My father was 43 when diagnosed with ALS. (On my Mother's 40th Birthday) He had weakness in one hand. He passed away at age 45, a little less than two years from diagnosis. My parents had been married 22 years at the time of his passing. There are four of us kids. We were 14, 11, 10, and 7 when he passed away. My Mother never remarried. She said he was the love of her life. She raised us well. We wouldn't trade them as parents. A wise person told my Mom as he helped Daddy to the car, "Don't let tomorrows sorrows spoil today's happiness. "
I pray for you and your husband and your children.

Kristin Neva avatar

Kristin Neva

Thanks for sharing, Theresa. Your words make me hopeful that when our kids are grown and look back on their childhood, they will think similarly.

Theresa Fraser avatar

Theresa Fraser

Thanks for your reply Kristin. You have a lovely family and I am sure your children will have many fond and beautiful memories of their childhood. I remember being grown and seeing a picture of my father when he was very thin and weak and I being 11 when he passed away did not remember seeing him looking so ill. Through my child eyes he always looked like my Dad.

Beth Simonson avatar

Beth Simonson

Hello Kristen and Todd...
I've been meaning to connect with you for months. I can relate to all your posts. I have an instant bond with you through ALS and with growing up in the U.P. I have had slow progressing symptoms of ALS for 10 years though was only diagnosed in 2019. I grew up close to Marquette though have lived in Canada for nearly 40 years with my husband and family. I still have family who live in the Ishpeming area and we visit there when my health allows.I would love to share ALS experiences with you. What is the best way to communicate?
Looking forward to hearing from you!
Best wishes!
Beth Simonson

Kristin Neva avatar

Kristin Neva

Thanks for commenting Beth! Nice to hear from a fellow Yooper! You can find our email on our blog: or we are on Facebook:

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