The ALS Association is committed to making ALS a livable disease until new treatments and a cure are found. And while the term “livable” may mean different things to different people, an ALS diagnosis doesn’t have to mean you can’t enjoy your best life.
Long-time natives of Colorado, Ellen and Lorenzo enjoyed an active busy lifestyle. Married twenty-four years, they were active in their community and kept very busy with three grown children, nine grandchildren, and three great grandchildren. Until ALS entered the picture, their plans for living a long and full life were all they dreamt about.
As Ellen was preparing to retire after her thirty-year legal career, she noticed some minor symptoms of cramping in her feet and experienced a few falls. After seven long months of visiting doctors and a barrage of tests, she was diagnosed with ALS in February of 2020 at the Mayo Clinic. Needless to say, they were both shocked and devastated by the news.
Lorenzo reflected on their life before ALS. “She has been so active all her life. It's been a matter of chasing her, you know. We would go to the farm, and she'd bounce through the field like Bambi,” he said. In their free time, Lorenzo and Ellen also enjoyed the performing arts, Lorenzo as a musician and Ellen as a dancer, traveling the world together.
“We always think of doctors, doctors will heal us and fix us. Doctors cannot heal us and fix us. And so, our time together is very precious. I don't know how much time we have, but we sure have had a hell of a good ride.”
– Lorenzo Trujillo
After learning of Ellen’s diagnosis, the couple was determined to learn more about ALS, what it was, and what this new normal would mean for them and their family. Knowing she had a third cousin that had passed away from ALS, Ellen shared “it was very important to me to have some genetic testing so I could make sure of what we were dealing with in the family.”
Ellen and Lorenzo continued to learn more about ALS on the Association’s website and connected with The ALS Association Rocky Mountain Chapter, which the couple says proved to be a great resource and tremendous help in their journey so far. “Whenever we are needing questions answered or, you know, all of this is so new to us, we don't know exactly what we don't know,” says Ellen. From support groups to equipment and home modification suggestions, the Chapter continues to provide much-needed advice, education and guidance. “While we're continuing to live, we're also trying to find ways that are going to assist me to, to live a little bit better, a little bit easier.”
But while they want to continue to learn more about living with ALS, Ellen says, “I try very hard not to look too far into the future. I want to know what I want to know for right now, but I don't want to look too far ahead, and I just want to take each day for what I can right now and appreciate the little things around me. And so that's been a real change in our lives.” Ellen goes on to say that while it’s been difficult at times, she believes that her diagnosis has brought her and her family and friends even closer and has taught her to appreciate her experiences even more.
Lorenzo says they are very fortunate to have their family and a close circle of friends who are always willing to help pitch in and spend quality time together playing games, cooking, watching movies and just enjoying the time they spend together. He says that when Ellen’s friends come over, “I become like the waiter and the bottle washer and cleaner upper, and they have a ball, and they laugh and they talk. And that brings me great joy.”
When asked what they would want people to know about living with ALS, Lorenzo said he wished families knew they can continue to live the best they can. “Of course, things are going to be different. They are different,“ he said. “But you can continue to do the things that you want to do. You might have to do them differently, but I want them to know that you can continue to keep on living the best you can.”
Special thanks to Ellen and Lorenzo and the team at The ALS Association Rocky Mountain Chapter for allowing us to share their inspiring story of their personal journey with ALS. To learn more about how you can help make a difference for people impacted by ALS, visit our website here: als.org/get-involved
To continue to follow stories from people in the ALS community and to learn more about the disease, follow our blog at als.org/blog.
My brother was diagnosed in April 2021. He has been taking Radacava infusions since then. He still walks, talks, eats and does not use any devices to help him walk or climb stairs. His problems are…..he tires easily and can’t walk long distances….he has shortness of breath episodes. He has lost weight because he can’t eat the way he used to eat…….he gets full quickly and is very uncomfortable if he eats too much…..the people in these videos look much more healthy than my brother. He refuses to take anti depressants and does not want to join an ALS help group because he doesn’t want to see people who will remind him of what’s to come. He doesn’t feel like he can travel…he would love to go to Colorado but he is afraid to fly and he is also afraid of altitude problems in Colorado. Does Ellen have any problems with flying or altitude?
Hi Gail. My heart goes out to you and your brother. He may benefit from attending an ALS clinic where he can see many specialists who can answer his questions and refer him to other resources. There's a list of clinics here: https://www.als.org/local-support/certified-centers-clinics
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