Four hundred and forty-seven days is not long enough to get used to knowing you’ll lose your greatest love. My young, vibrant, smart, colorful, sports-loving, animal-rescuer wife of nearly 15 years was diagnosed with ALS disease in July of 2016 and she was gone in October of 2017. She was not yet a month past her 54th birthday.
Alison was a cytotechnologist for many years and also an attorney who did not practice, but she loved school and learning, and her opinion was much sought after at the hospitals and pathology labs where she worked throughout her career. Maybe it’s this medical background that gave her such a practical outlook on this mean disease of ALS. Like many ALS patients, she went through the process of eliminating all the other mean diseases only to come to the diagnosis that a family never expects—or wants—to hear.
Patients whose stories I read are quite varied on how ALS symptoms present and when. Our journey seemed to be at Mach speed with her symptoms progressing. Her lungs were in terrible shape early on while her legs and arms had some movement after a few months after diagnosis. She wanted to do things for herself but those with ALS don’t get that luxury for long. One special prayer during this time was that Alison could speak. While her last weeks were difficult, she could speak and we were so thankful for that answered prayer.
I am grateful that she was able to be at home during her illness. My workplace was very understanding as Alison’s needs increased—I needed and wanted to be home and was able to do that. Alison’s sister Kim (just 15 months younger and her only sibling) and husband Dusty were able to be with us on weekends. Both Alison’s parents and my parents visited regularly which was a blessing to not just Alison, but also me. Our three rescue dogs made for good company, too. And, we were able to bring in a special care giver who was with us just over six months, and she was a difference-maker in our home.
It’s hard to be around the dying. People don’t really know what to do but that didn’t stop Alison’s friends, co-workers as well as my co-workers and our neighbors. They all ministered to us in their own ways which helped bear the burden that ALS presses on its families.
I’m determined to work to give other families hope of a life that can be good, even while sick. I’m even more hell-bent on finding drug therapies that can help patients. It wasn’t long after Alison passed that I created the 447 Foundation. I believe I’ve found a perfect match for funds that I raise in Alison’s memory and to honor her. The ALS TDI (ALS Therapy Development Institute in Cambridge, MA) scientists are working 24/7 to develop treatments for ALS. ALS TDI is the world’s first and largest nonprofit biotech focused 100 percent on ALS research.