Small changes are helping me run the ALS race to the ‘finish line’

I wish I could shake the sadness I feel as my husband Todd’s caregiver after 15 years with ALS. There’s been a cloud over our lives since his diagnosis, even when his only physical symptom was a weak arm.

Living with ALS has taken a toll on both of us. But, for a few reasons, I’m doing better than I have in a long time.

I started a new medication and made some dietary changes that are helping with my autoimmune issues, so I’m feeling better, sleeping better, and have more energy than I’ve had in years. That alone improves my outlook on life, even with ALS.

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I’ve recently also had less stress in finding night caregivers to get Todd ready for bed and turn him at night so I get six hours to sleep. We’ve had a consistent team lately with a couple people willing to fill in as subs. Good sleep is so necessary for my mental and physical health, and Todd has been sleeping better, too.

And I’ve had a daytime distraction with something to think about other than ALS — the small business I started, which I wrote about last week. It gives both me and Todd a creative outlet, and having a dream to pursue is good for mental health. It also helps that our kids are doing well and are more independent, with one in college and one in high school and licensed to drive. I have much less on my plate.

Dare I say I’m coping?

Little victories

But it can still sometimes feel like a fragile truce.

Last weekend, one of Todd’s night caregivers canceled, and my anxiety rose as I sent text messages to our usual subs and regular night caregivers and got a half dozen “not available” messages. My body remembers what a bad place I was at before we started hiring nighttime help and I was on duty 24/7. Finally, one of our regulars said yes, and the tension subsided.

On Friday night, as I sat in the bleachers to watch our son’s football game, I felt such a sense of loss. Other couples were cheering on their kids, and I wished Todd could be there with me, but he was at home watching a livestream of the game on his computer. We will never share this experience together.

And I still feel like it’s a daily fight to keep Todd alive. I need to give manual assist coughs several times each week, usually at least once a day, so Todd can keep his lungs clear of mucus. It’s hard to watch someone struggle to breathe.

I know tougher days are ahead of us, but I feel hopeful that I’ll be able to run this race to the finish line.

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.