Our Story

Gary and Carol Godfrey

Living with ALS

I was diagnosed with ALS on January 8, 2019. I was experiencing weakness in my arm. I noticed it when I was playing basketball. I was shooting free throws, and I could not hit the rim. At first, I thought it was because I had not played in 25 years—because I was traveling so much. We realized this was much more than me being fat and out of shape.

In less than two years I went from riding a bike, golfing, playing basketball, water skiing, and other activities to being unable to walk or use my arms, unable to speak or breathe without assistance. In fact, I am using my eyes to type this to you.

I went through many tests, pricks, MRIs and ended up at the Emory ALS Clinic. I met with a highly regarded ALS clinician who told me, “I wish I could tell you something else, but you have ALS.” I was relieved to finally know. After all, we had earned our medical degree from the University of Google and were kind of expecting it.

Once I heard those words, my mind went into problem-solving mode. After all, this is what I did for my clients during my career. However, now I was the client, and we just received a diagnosis that had no cure. Not once did I spend any energy on “why me or how did this happen?” In my mind, that is wasted energy.

Iwas diagnosed with ALS on January 8, 2019. I was experiencing weakness in my arm. I noticed it when I was playing basketball. I was shooting free throws, and I could not hit the rim. At first, I thought it was because I had not played in 25 years—because I was traveling so much. We realized this was much more than me being fat and out of shape.

In less than two years I went from riding a bike, golfing, playing basketball, water skiing, and other activities to being unable to walk or use my arms, unable to speak or breathe without assistance. In fact, I am using my eyes to type this to you.

I went through many tests, pricks, MRIs and ended up at the Emory ALS Clinic. I met with a highly regarded ALS clinician who told me, “I wish I could tell you something else, but you have ALS.” I was relieved to finally know. After all, we had earned our medical degree from the University of Google and were kind of expecting it.

Once I heard those words, my mind went into problem-solving mode. After all, this is what I did for my clients during my career. However, now I was the client, and we just received a diagnosis that had no cure. Not once did I spend any energy on “why me or how did this happen?” In my mind, that is wasted energy.

“This journey has brought new, enriching experiences that we never would have experienced. The journey has been challenging but fulfilling.”

– Gary Godfrey

I had a choice.

I could spend my energy on fighting ALS or I could focus on living with ALS. I chose the latter. That’s when all my Auburn basketball experiences kicked in. What did I have to do to stay on the court (probably not the best metaphor since I wasn’t on the court that much during my career at Auburn). Or in this case, what do I have to do to live a full life with ALS.

To borrow a famous Michael Jackson quote with one slight alteration, “I’m a [liver], not a fighter.”

I felt like we were driving down I-285 in Atlanta at 95 miles per hour and there weren’t any road signs. Carol Godfrey

“When we first found out about what was going on with Gary, it seemed like things were moving so fast. But the thing about having ALS for Gary and [me] is that it has been a journey that we’ve had together.

ALS has allowed us to work on ALS together and work on really impacting others’ lives— impacting our own—and making that difference. It really brought us closer than I would have thought. Our marriage is stronger than it was when we rolled into this.” – Carol Godfrey

I know that God has a plan for me.

I believe there is a purpose that God wants me to serve. I believe the purpose is to share how important today is and trying to make a difference in this world we live in.

When you are facing a terminal disease, there comes a clarity on how important each day is. You cannot change yesterday, and tomorrow is not guaranteed. So each day is a blessing. I did not understand that when I was caught up in daily activities.

I have realized how much joy there is having a positive impact on someone or something each day. Therefore, I try to make each day my best day yet. My best days are when I can make a difference in someone’s life. As I said earlier, I believe that is the purpose God wants me to serve. I want to share my message to everyone I can reach.

Our Mission

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To provide resources and support to people living with ALS and their loved ones. So they can “make today their best day.”

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