My “Why?”

My wife and I stopped in Connecticut with our one-year-old daughter for a short visit with my parents, as we often did to break up the long drive between her family in Pennsylvania and our home in Western Massachusetts. Surprised that my dad was home from work early, I asked about it, and he awkwardly told me he had retired that day.

This came out of the blue to me, and made no sense. He was only 54 years old, and he recently had shared with me that he was proud of his accomplishments at work, and his ability to provide for his family.

I followed him into his bedroom, pressuring him to explain, and after resistance he eventually acquiesced. He told me he was diagnosed with Alzheimer's disease. With his voice breaking for the first and last time I ever witnessed, he told me to make sure my mom — the love of his life — would be ok.

My mom, always the protector, did not tell my sisters and me that she had been taking my dad for tests over much of the preceding year after a long-time co-worker and friend told her my dad seemed uncharacteristically worn out at work. "He needed a vacation," this colleague said, which didn't add up for my mom.

My dad’s experience.

My mom was the toughest person I knew, and she was my dad's champion for the next thirteen hard years of his life. He was the love of her life. Both my mom and dad did everything right, but the disease progressed quickly. And with ravaging symptoms.

My dad became increasingly scared and paranoid. He was often agitated and anxious, and he stopped sleeping at night. Because he was otherwise healthy and extraordinarily athletic, these changes sometimes put others at risk. My dad was always kind and thoughtful—and in spite of behavior changes, it was easy to feel the presence of his gentle soul. He would have been the most horrified if he was aware of his danger to others. I hope he wasn't. His profound fear was the cruelest symptom.

In the last several years of his life, he would pace all night, never sleeping in a bed, and he couldn't feed himself or speak. But often he would look us in the eye and make gentle sounds that were loving and beautiful and devastating.

I loved him beyond words — and my mom too. Being a witness to their pain throughout my dad’s decline was overwhelming, and my grief, even several years after his death, felt like something to bottle up as I didn’t have the tools to cope with it and handle my day-to-day responsibilities.

One of six million.

I share this reluctantly, now more than two decades after his death. Alzheimer's disease manifests in individual ways, perhaps as different as the lives of each of the estimated six million Americans living with it today. I don't want to suggest that my dad's story represents more than one person's experience with the disease, though surely a lot of what he — and we — navigated is true for many.

Mostly I am reluctant because many patients and their families find ways to live rich lives full of love and laughter, Alzheimer's be damned. I am inspired by the ways in which people find hope, fight off despair. And we had magical moments as well, especially early on. My younger daughter was born a year after my dad's diagnosis, and she remembers his enthusiasm and endless patience pushing her on a creaky spring-loaded rocking horse, as if she were his entire world in that moment.

But I wanted to share this pain to share how crushed I was. Even years after his death when he was finally at peace, I was pretty sure I could never be happy again.

Doing something with my grief.

Eight years after he died, I decided to do a solo trans-continental fundraising run to honor my dad, an opportunity to step out of my frenzied life for time to remember and mourn. I had selected Cure Alzheimer’s Fund after investigating research-oriented organizations. It was an easy choice, and turned out to be better than I could have imagined.

I liked that CureAlz is intentional — and frankly brilliant — at making every dollar matter. It felt really good to be asking people for donations knowing CureAlz would meticulously invest 100% in critical research to stop Alzheimer’s from afflicting others as it had in my family. Indeed as it continues to afflict my family: Two of my dad's siblings died last year with Alzheimer's, my Aunt Betty and Uncle Dave.

I was inspired by the CureAlz founders who launched the Fund to muster all the resources they could to fight a disease that touched their families deeply. They and a few others cover all the administrative costs so every dollar donated goes to research.

CureAlz is laser-focused on identifying the most important research challenges. With amazing agility, they can quickly fund promising research. Because of this early funding, researchers are better able to demonstrate the value of their work to win much larger grants from National Institutes of Health and other sources that are unable to fund projects in their critical early stages.

We’re in this together.

To be honest, I didn’t know before the 2011 run that resulting donations could possibly matter, especially when billions more in funding is needed. All the news I was hearing about Alzheimer’s research back then was so discouraging.

Turns out the people of Cure Alzheimer’s Fund are as lovely as they are good at funding Alzheimer's research. I quickly felt like part of the family, and what I thought of as a solo act became more about community. I was part of something bigger, and I will always be grateful to them for helping me understand that by joining with others, we can do something to stop Alzheimer's. I needed that.

In these years since 2011, research on preventing and stopping Alzheimer’s has shifted from discouraging to hopeful, and Cure Alzheimer’s Fund is at the center. When I was disheartened, they were not, and the implications for our country — and my family — are immeasurable.

Though I mostly ran alone in my 2011 run, pushing my gear in the stroller in the header photo, and sleeping in an ultralight tent as out of sight as I could manage, I never felt alone. I was sustained by people near and far who were invested in AlzRun's goals and wanted to pitch in. Everywhere there was love and support, a growing web of family and friends, and friends of friends, and so many beautiful strangers. In Portland and Prineville OR and Boise and Victor ID and Wilson and Upton WY and Eagle Butte SD and Madison WI and Warren OH and endless other places — all types of people in all types of communities. And I was blown away by how many people donated money to CureAlz.

Focusing on community.

So this new project, now thirteen years later, is focused on building community — inviting people in each state to participate locally, and run with me, and connect with others nationwide. I hope this includes you. It is what will make the project successful and where I know I personally will find the most joy. I ask that you join me in whatever way you can. Thank you!