I am Alisa Cain
a family member of someone living with ALS,
caring for someone living with ALS
But I want you to know that there are also many amazing things that we have experienced since my diagnosis. One of the coolest things that has happened is that my friends and I tell each other “I love you” more often. Although we always loved each other, it mostly went unsaid.
Joe and Alisa Cain were both born and raised in the South — Joe in Columbia, SC, and Alisa in the Atlanta area. Joe graduated from Clemson University, majoring in Electrical Engineering. Alisa chose an amazing career in the salon world. Joe’s career spanned 26 years with Emerson and Control Southern located in Johns Creek. Joe served as a senior Vice President and served on the advisory board at Control Southern.
Joe and Alisa both have two beautiful children from previous marriages. Joe’s are son, Jordan, and daughter, Allie; Alisa’s are daughters, Kimber and Kaleigh. Joe’s children lost their mother Jayne to a rare form of carcinoma, and they never want to forget that she is still here with them through the children and grandchildren. Jayne would be pleased to see how these children have handled life and what amazing humans they have become. Joe and Alisa’s beautiful, blended family has been expanded with amazing son and daughter in laws, Macey, Josh, Phil, and Jack and also include the blessings of two wonderful grandchildren, Ford and Izzy. Joe and his family are living with ALS! Alisa is not only a loving wife and best friend to Joe, but also the best caregiver to him.
Joe’s ALS journey started long before he was diagnosed or even had symptoms. A good friend and coworker of Joe’s was diagnosed with ALS years ago, and upon learning of this diagnosis they sprang into action by getting involved with the Fiesta 5K and the MDA Night of Hope Gala supporting ALS research. It was unimaginable that their friend could be diagnosed with a disease that had no cure and was terminal. Joe and Alisa were happy to give their time and resources to support the mission to end ALS. It wasn’t long after another co-worker’s spouse was also given the same terrible diagnosis. While the Cain’s hearts were saddened, they increased their efforts in support of ALS research.
It was years later in July 2020 Joe was enjoying a day on Lake Lanier with family and friends. It was a day like many days before — swimming, boating, and wake surfing. But on this day, Joe couldn’t get up on the surfboard. After continually wiping out, completely unable to get on the board, something that had come so easily before, the concern began. After complete exhaustion, Joe got back in the boat and thought “boy, had I gotten that old, overweight, and out of shape!” Joe made a plan to improve that! Alisa had already been asking Joe to walk with her more, so that was a good starting point. Joe and Alisa put on their walking shoes and headed out into the neighborhood. This walk would be different than any walk before. After a couple hundred yards or so, Joe became completely exhausted, having to stop and rest. This experience left Joe with so many questions, trying to make sense of what was happening.
By August, Joe had developed a limp, but had no pain. After two back surgeries years earlier, a visit to the orthopedic doctor was next. However, there was no orthopedic reason for the symptoms and Joe was referred to a neurologist. After Googling a few things, Joe realized it was not looking good! By the end of October, an ALS diagnosis was confirmed.
After receiving a diagnosis that didn’t seem real at first, Joe and Alisa were determined to find every avenue on how to live and thrive with their new reality. Joe graduated from Clemson University in 1988. One of his favorite phrases that Dabo Swinney is credited with is “The only true disability in life is a bad attitude.” Joe says, “I am here today to proclaim that phrase! I also believe that a good attitude is a choice. You have to wake up each morning grateful for that day and choose to be a positive light and influence on others in the best way you can and to the best of your ability.”
Joe states, “It would be easy for me and Alisa to list all the challenges we have while living with ALS. The list would be long, and it is truly a terrible disease. But I want you to know that there are also many amazing things that we have experienced since my diagnosis. One of the coolest things that has happened is that my friends and I tell each other “I love you” more often. Although we always loved each other, it mostly went unsaid. We now take every opportunity to say it. I encourage everyone not to wait for a terminal diagnosis to start saying those three words. There is something special about hearing and saying those words. I’d rather have ALS and hear those words than be cured and not hear them. It is truly powerful. We as a nation and as a world need to say those words more often.”
Joe and Alisa hope to encourage others with their journey. It is a privilege to be able to honor them and their family at the 2023 Night of Hope Gala as the Steven Ennis Award recipients and Honorees.
Atlanta GA 2023 ALS Gala.
During her illness, she kept her positive attitude and had a kind and gentle spirit. She was thoughtful, compassionate, uplifting and gracious with integrity and dignity throughout her life.