I am Nicole Coffin

a family member of someone living with ALS,
caring for someone living with ALS


The scariest part is every morning waking up to see if he still has full use of everything that he had the day before.

My husband now 48 began having symptoms in 2019, we ignored it and chalked it up to him not paying attention. After he began losing weight fast, without trying, we knew something wasn’t right. He went to his primary, had a ton of blood work and tests done which all came back normal. He then went to go see a hand specialist — the best in the country. We thought that he had a ruptured tendon. His sister being a nurse referred him to a neurologist, we thought maybe neuropathy, turned out ALS. He was diagnosed in August of 2023 after an EMG showed clearly upper and lower neurodegeneration.

Since that day not much has changed in life other than his mobility and his use of his hands. We’re fortunate that he is not on any breathing treatments or a feeding tube, he can still eat and drink and speak. The scariest part is every morning waking up to see if he still has full use of everything that he had the day before. We never know what the day may bring. He remains positive, tries to put it out of his head as much as possible until his body is too obvious for him to ignore. Personally I look at him no differently than I did before the symptoms even started. I can’t even see the degeneration unless I watch him trying to do something that he used to do with ease.

This disease is a taker. It takes everything from the person diagnosed and the people who love them. We’ve been married 21 years this year, I don’t know adult life without him, so close to empty nester and soon retirement, all that taken from us just as he hits the comfortable level at his work. We had so many plans, so many places we wanted to go and now we just want to find a way to slow his progression. I will never be able to put into words what this disease is taking from me. I will never be able to explain to anyone what it has taken from my husband and I really don’t know how I will ever recover after caregiving for him and failing. There is no winning from the taker, he only takes, everything, and then walks away with you left with nothing, empty, without purpose and alone. My heart that I can still feel goes out to anyone suffering from this taker in the family that’s trying to maintain. I pray for you all.

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