Our Story is Really a Love Story
Our story is really a love story. Michael and I first met years ago as colleagues, and I knew then that he was a man of strength, great vision and unwavering determination. Unfortunately, six months after our wedding, Michael, just 56-years-old, was diagnosed with early onset Alzheimer’s. Only four percent of Alzheimer’s patients are younger than 65. It was like someone pulled the rug out from under us, our fairy tale changed forever.
In spite of the terrifying and stunning diagnosis we decided, after letting it sink in for a day, that, together, we would fight this monster. But we would do it with the world watching. Maintaining silence would only fuel the disease. But the world didn’t just watch; people—our friends, family, and acquaintances—began to listen and we realized that by educating others on the disease—and how to manage it on a daily basis—we could add something meaningful to the work of so many researchers and physicians studying to find a cure for Alzheimer’s.
Prior to his illness, Michael, a former executive with Home Depot and the founding member of Corporate Property Dispositions, had a philosophy that resonated in both his professional and personal lives. He’s always believed that when something bad happens, you take one and one day only to be depressed, angry, whatever. And then, after that 24-hour period, you get to work and lay out your strategy in order to tackle the issue. And that’s what we did! We’re a strong team and together that is what we continue to do. Along with family, friends, and medical professionals, we fight the disease and learn how to live with it in a way that preserves our day-to-day life. This attitude increases our quality of life and overall environment on a daily basis.
You might wonder how that can even be possible. First, we remain relentlessly positive even as Michael reaches stages that chip away at the man I once knew. Second, we never allow anyone to take our hope away. As Vince Lombardi said, “Once you learn to quit, it becomes a habit.” For us, quitting is not an option.
Perseverance fuels our determination to keep moving. In the early days, after our initial shock, we found a glut of information about the end stages of the disease, planning for the future, and medical treatment. We also learned about ways to talk to children about their why grandma or grandpa couldn’t remember them. But we found nothing about early-onset Alzheimer’s and we desperately needed guidance on how to live as well as possible for as long as possible. Since we couldn’t find a plan of action we created our own, one that would allow us to achieve both of our needs and allow Michael to be successful—Michael’s as the patient and mine as the primary caregiver.
Once I collected as much information as I could—which was sadly inadequate—I parked myself in front of the computer and began to reach out and connect with experts from across the country as well as those closer to home in and around Chicago, Illinois. I was not afraid to pick up the phone or send an email to anyone who I thought could give me helpful information. Slowly but steadily I began to piece together the multifaceted program that has kept Michael’s condition at “status quo” for four years.
As time went on, Michael and I talked about the tremendous lack of information that exists on early-onset Alzheimer’s. We were stunned, actually, that the literature available said nothing about finding ways to enjoy and preserve life versus giving up. So we decided to try to help others, which represents a legacy for Michael and a focus for me. We than began our new journey to write The 24-Hour Rule: Living with Alzheimer’s. This book, which will be released in the early fall of 2016, contains our personal experiences and outlines helpful hints and practical strategies that we have found to be positive, lifesaving, and worthy of sharing. Our hope is the book will be a rich resource for newly diagnosed patients and a helpful, how-to guide for family members, new caregivers, and friends who want and need to understand the illness. Alzheimer’s doesn’t just affect the person with the illness; it affects family members, friends, colleagues, and even well-intentioned strangers.
Our story and our lives are always changing from one day to the other. Our sincere hope is that we inspire, encourage, and most of all, remind you that your and your loved one suffering from Alzheimer’s are never alone in your fight.
An additional video with more of our story can be seen here: Cheryl & Michael: Find the New Normal https://contextmediainc.wistia.com/medias/1vn9hjvn08