Navigating Life Together: One Couple’s Journey Through the Phases of ALS

At ALS United Rocky Mountain, we are continually inspired by the resilience, adaptability, and strength of the individuals and families we serve. Living with ALS brings new challenges in every phase, but it also brings new ways to support one another, adapt with grace, and find solutions that honor both independence and care. In this heartfelt reflection, one of our community members, Susan Sorlien, shares how she and her husband Ron, partners for over 55 years, are navigating the unexpected path of Bulbar ALS with thoughtful planning, mutual support, and unwavering love.

Susan Sorlien was diagnosed in May of 2023.

My husband Ron and I have always tried to focus on the paths needed for the different phases of our lives in our 55 years of marriage.

And now, in the new, unexpected Bulbar ALS phase, it has become more important to listen to each other’s wants and needs, and to consider suggestions from other responsible people. For example, several years ago, as we were aging, we replaced the lower toilets and our main bathroom vanity with higher units. Both changes have been great. We are now replacing the main bathtub with a walk-in tub for me, but it can also be used by Ron, if needed or wanted.

A few months ago, Ron purchased two car assist door handles, which make it much easier for me to get in and out of our vehicles. He also bought a lightweight portable transport chair to eliminate long walks for me when, for example, I go to my ALS Clinic appointments.

A few years ago when Ron was recovering from knee replacement surgery, I bought several soft white LED Auto On Directional Spot Lights to place in certain areas so he wouldn’t trip over something. After my ALS diagnosis, I purchased some additional ones to add in other areas, such as every bathroom, around the stairs, and by each doorway. I recently asked Ron if he could put a heavy-duty stainless steel grab door bar next to the door that comes into the house from the garage. Even now, he thinks that was a great request for a tool that he uses a lot, too.

It was suggested by some ALS Clinic Staff that I should get a Suction Machine to use for my mucus problems and to install a Feeding Tube, which I would probably be needing. So, I agreed to both and really feel that both units have “saved my life.”

These are just a few examples of changes we have made. The Bottom Line that I’m suggesting is that we need to focus on the paths needed for the different phases of our lives.

– Susan Sorlien

Stories like this serve as powerful reminders that even in the face of ALS, there are ways to reclaim safety, dignity, and quality of life through proactive choices and shared strength. Whether it’s modifying a home, embracing helpful tools, or listening closely to expert advice and to each other, every step forward matters. At ALS United Rocky Mountain, we are honored to walk alongside families like Susan and Ron, offering resources, support, and hope through every phase of the journey. If you or someone you love is facing ALS, please know: you are not alone. We’re here to help you navigate the path ahead with compassion and care.