Dear Friends, 

It’s July 2021 and I’m thankful to have my husband with me. ALS certainly wasn’t in our retirement plans…nor anyone’s. The plans we had for the first three years of our retirement were centered around the independence we would have from the 8-5 work-day world. ALS had a different plan for us. When I think about what the word “independence” means to us now, it’s a whole different thing. Now, it’s Steve still having the movement of his arms and hands, being able to control his 400 lb. chair to get out into the sunshine, showering without my assistance and feeding himself. We don’t take any of these independent movements for granted anymore. Steve’s health care team and the ALS Association have been instrumental in allowing him to maintain the independence he does have. We learn constantly about new types of equipment that help him live a better life. Independence=maintaining his dignity. That’s our #1 goal these days.

Steve was accepted at the U.W. to participate in a clinical trial last October. It was a six month trial and during that time we didn’t know if he was on the real drug or a placebo. His trial was over in April, he’s been on the real drug since then. He’ll be able to take that for twelve months. It’s unclear if there’s been a benefit to him, as his condition is clearly progressing. However, without people like Steve, who are willing to join these trials, beneficial therapies would take much longer to come to pALS.

Steve’s lost his ability to speak beyond a faint whisper. We’ve found some interesting ways to communicate. He uses the obvious phone app and hand signs but the more creative versions include a strange version of Pictionary and the one that gets my attention the quickest; honking at me. Yes, the horn on his chair has me acting like Pavlov’s dog. One honk is “Hey, I have something to say to you.”  Multiple honks, mean, “PAY ATTENTION TO ME!”  There are still laughs to be had!

Please consider supporting our cause. pALS and their families can’t beat this disease alone. Our thanks and gratitude are abundant for you!

With Gratitude, 

Denise & Steve Hagen (pALS since 2019)