My wife of 32 years, Margie, started showing symptoms of Alzheimer’s at age 50. Three years later, we met with her primary care physician who ran down the list of warning signs. He was sure it wasn’t Alzheimer’s because “she was way too young for that.” He was wrong. Now at age 57, Margie is in the late stages of younger-onset Alzheimer’s.
Margie’s mother died of Alzheimer’s in 2010 and her sister, now in her early 50s, was just diagnosed. One of the things I want to do with my life is raise awareness. My hope is that the action it inspires will lead to a day when Alzheimer’s doesn’t devastate anyone else.
Today is about action. Along with friends and family, including our three children, I am participating in Alzheimer’s Association The Longest Day, a 16-hour event to raise awareness and funds for Alzheimer’s support, care and research. Our team name, “Minds Over Matter,” is an inspiring-if-complex reflection of our family and friends’ collective effort to combat the devastating impact of Alzheimer’s with hope and strength. The team consists of a core group of 12 people doing a range of activities from running and walking to skateboarding and cycling. I think for all of us, it’s kind of empowering—a small way to do something about what feels like a hopeless situation.
It’s also a tribute to Margie, who was driven to help others. Twenty years ago, she founded the food pantry in the Boston suburb where we live, and she managed it until she became too ill to continue. In 2006, the town named her Citizen of the Year for her lifetime of community service.
Margie is now in need of 24-hour care, which is given with love in our home by an amazing team of caregivers we call “Team Margie.”
Accepting that Margie’s has younger-onset Alzheimer’s and managing the day-to-day challenges often feels overwhelming. Participating in The Longest Day with my family and friends is my small way of fighting back. I want to raise awareness of the devastating impacts of this disease on families and provide funding for Alzheimer’s research. It is my hope that together we can end Alzheimer’s so other families will be spared the pain and hopelessness we have experienced.
About the blog author: Matt Steele cares for his wife, Margie, who has younger-onset Alzheimer’s. He is helping to raise awareness and funds with team Minds Over Matter in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers. Matt is also a member of the Alzheimer’s Association Alois Society.