ALS Is Rare, but My Husband Is Part of a Broader Rare Community

Kristin Neva avatar

by Kristin Neva |

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I didn’t react when a spine care specialist mentioned ALS as a possible cause of my husband’s weak arm, because I didn’t know what ALS was. Todd and I talked about daily life during the drive home from the appointment, and it wasn’t until later that evening when the kids were in bed that I got a chance to sit down at my computer to type in those three letters: A-L-S.

I sobbed when I read the devastating description, and Todd tried to comfort me, saying, “He’s wrong. I’m fine. This is just a big mistake, and everything’s going to be OK.”

Todd was familiar with ALS because a family friend had died from the disease a year earlier. The friend’s symptoms came on so suddenly that his doctors first thought he’d had a stroke. But the disease progressed quickly and became unmistakable. He became paralyzed, and then a year and a half after his diagnosis, he died in a hospital bed in his home. Todd convinced himself and me that his weak arm was something much less serious.

But a few weeks later, we met with the neurologist and officially joined an exclusive club that no one wants to be a member of.

As rare as ALS is — the incidence rate in the U.S. is two per 100,000 people — the disease manifests and progresses differently in each person, so much so that it often feels as though we are dealing with different conditions. Some first lose their ability to walk. Others like Todd see their first symptoms in a weak hand or arm. Others have bulbar onset and experience difficulties with speaking, swallowing, or breathing.

Because the path the disease takes is so varied, it can feel even more isolating. Even among people dealing with the disease, each individual’s experience is different.

Another varying factor is age. ALS most often strikes those over 60, but some get it in their 20s and 30s. Todd was 39 when he was diagnosed. A person’s particular life stage brings another layer of uniqueness to their situation. For families like ours with young children, we have the additional challenges of trying to balance care for a spouse with parenting small children. My older friends have the challenge of trying to care for their spouses while their own bodies are aging.

The progression rate is different for each person. The average life expectancy is two to five years from diagnosis, but up to 10 percent live for more than 10 years after an ALS diagnosis. Todd is approaching that 10-year milestone this spring. We are hopeful that he will be in that group of five in a million.

Slow ALS progression gives Todd the opportunity to see our children grow and to be a presence in their lives. We’ve had time to adapt and figure out how to manage each stage of the disease. Todd and I are glad for the chance to adapt, but slow progression presents unique challenges. Managing a progressive terminal disease over a decade or more requires resources — it’s expensive and labor-intensive.

Even though ALS is rare, and Todd’s experience is unique, he is part of a broader community of 300 million people living with one or more of 6,000 rare diseases.

We set aside the last day of February every year to raise awareness for rare diseases, those diseases that inflict so few people and where symptoms are so varied that getting a diagnosis can be difficult; diseases so rare that relatively little funding has gone to finding a cure; and diseases that cause life challenges without simple or effective solutions.

Behind the 300 million people living with a rare disease, there are many more people caring for them. This Rare Disease Day on Feb. 29, let’s all raise awareness of the disease that affects our lives and learn about other rare diseases so that we can stand together and advocate for a better world.


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 Services, and are intended to spark discussion about issues pertaining to ALS.


jerry edelman avatar

jerry edelman

my son sandy (46) has had als for a few years now,, he is at the point where can not control his wheelchair. I don't understand why if there is a test out there we have to wait years for the fda to ok it. just try it


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