Abby's Road: Funding for Alzheimer's is a marathon, not a sprint

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My husband wakes me up. He dresses me in my favorite pants and a comfortable top. He settles me into a chair on the porch, where I can watch the foot and vehicle traffic. I am surrounded by my books, a blanket tucked around my knees.

I receive visitors. They kiss me on the cheek and hold my hand. They ask me questions, tell me stories. I am supposed to know them, but I have no idea who they are.

I feel nervous, so I make conversation. I talk about how excited I am for camp. I wonder aloud what cabin Jane and I will be in. I hum camp songs.

The camp I am talking about is for girls. I am a grown woman. I am not going back to camp.

I’m not even going into another room unless someone is taking me there. I can’t find the kitchen, or walk upstairs, or operate the washing machine in this house where I’ve lived in for decades.

My husband places my lunch in front of me. I recognized him this morning, but now I think he is a waiter. I thank him politely and ask him to compliment the chef.

He tells me the two people joining us for lunch are our children. I gently correct him. My children are at day care. I need to pick them up by 5. I worry about all the work I have to do before then.

My children exchange a look. They have children of their own in day care. And I don’t work. I had to retire after I sat down at my computer and couldn’t remember what to use it for.

Soon after that, I was diagnosed with Alzheimer’s disease.

Fortunately, that scenario was pulled from my imagination. Unfortunately, it is a scenario that is not unimaginable. And I can fictionalize it easily, because I watched the non-fiction version when my grandmother lived with the disease for several years until it killed her.

Today, Alzheimer’s is the sixth-leading cause of death in U.S. adults, affecting more than 5 million Americans. Women are nearly twice as likely as men to be struck by Alzheimer’s, and there is a genetic predisposition to it.

Historically, research and clinical trials on Alzheimer’s disease has only begun after symptoms were already present. Memories were already erased, self-care was already impossible. Testing depended on invasive spinal taps.

Not anymore.

The Josephine and John Marr Alzheimer’s Research Fund is supporting research aimed at tackling when and how Alzheimer’s disease is diagnosed and managed. The fund, endowed by a Falmouth family, has partnered with a team at Boston-based Brigham and Women’s Hospital, led by Drs. Dennis Selkoe and Reisa Sperling. Their Alzheimer’s work focuses on early detection, improved monitoring, and enhanced intervention to halt the progress of the disease.

In just its first year of existence, the Marr Fund has contributed to meaningful advancements. The Selkoe-Sperling lab is now equipped with an instrument that can detect elevated levels of a protein suspected to be associated with Alzheimer’s disease. It is the first such academic lab in the United States.

What’s more, those proteins can be identified in blood samples, and they can be isolated before symptoms are even present in the patient. The Marr Fund has also allowed the research team to recruit a scientist to partner with the National Institutes of Health on research into early detection, and to launch an observational study in subjects ages 50-65.

Last year, the Marrs hosted a fundraising event in connection with the 2015 Maine Marathon. They set a fundraising goal, which they promptly exceeded by 400 percent. Another fundraising drive is under way this year, again capping off with relay runners, half-marathoners, and marathoners taking to the Maine Marathon route.

The fund channels 100 percent of contributions to Alzheimer’s research. For a secure donation form, go to https://giving.brighamandwomens.org/marr-fund.

You don’t have to be a runner, or friend or relative of the Marrs, or a deep pocket to be a worthy donor. You just have to be someone who doesn’t want to watch a loved one get lost inside her own mind, or someone who hopes he can always find his way home.

Abby Diaz grew up in Falmouth and lives there again, because that’s how life works. She blogs at whatsleftover.com. Follow Abby on Twitter: @AbbyDiaz1.

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