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How to support people affected by ALS

I was recently asked, “What can I do to support someone diagnosed with ALS?” I thought back to the days after my husband, Todd, was diagnosed with the disease. We knew little about it, except that it resulted in paralysis and usually death within two to five years.

How joy and sorrow have marked our years of birthdays

When I checked my email last Wednesday morning, I was delighted to see a message in my inbox titled “Birthday Memories.” It was from my husband, Todd, who was still in bed sleeping; he must’ve scheduled the email to surprise me on my 48th birthday. I sat down with my…

How a landscaping project energized me as an ALS caregiver

Thirteen years ago, we built an accessible home to accommodate my husband Todd’s progressive disability due to ALS. A general contractor supervised much of the construction, but we took on some of the work, including the landscaping. Todd was shaky on his feet and his arms were weak; nonetheless…

Finding my voice again as I continue to adapt to ALS

“I still can’t understand you. Say it one more time.” My husband and I were having a simple conversation, and I was trying to emphasize my point of view, but my mouth and tongue simply wouldn’t coordinate. Instead of pausing to slow down, I just kept repeating the same garbled…

How I navigate health anxiety and ALS fears

Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety. Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case…