My husband Colin was diagnosed with ALS in early 2018 at age 50. We had been dating about 4 years and had just started building a house and expanding his business as a professional mountain bike photographer. I had two children from a previous marriage who lived with us along with my 80 year old father. Colin and I were both avid mountain bikers, Colin having spent a decade traveling the world photographing the best of the best, and me racing and helping him with his business.

Colin’s ALS progression has been unique and very slow. 7 years in and while he can barely use his hands and arms, his legs are strong. He does struggle to talk and swallow but his breathing seems to be declining at a very slow rate. We also decided to expand our family after diagnosis and now also have a two year old.

Slow progressing ALS is a blessing and a curse. Being relatively young and with school-aged children means I have to continue to work and maintain health insurance benefits for my family. My father, who is now 88, does a lot of the daily caregiving tasks while I am at work. We know we will have to hire outside help soon, but for now, we are making due.

I would say there are some big life lessons learned over the past 7 years including learning to live in the moment and trying really hard to not worry about the future. Some of the unique things about our situation are we chose to have a child after diagnosis (what that means despite doing all the genetic testing and being told it is sporadic ALS), plus getting comfortable having hard discussions about quality versus quantity and what someone like me is capable of in terms of caregiving.