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Home My Alzheimer's Journey

My Alzheimer’s journey: The Longest Day

Fundraising event shows this Alzheimer's patient how much people care for him and for finding a cure

Phil Gutis by Phil Gutis
July 5, 2019
in My Alzheimer's Journey
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Phil Gutis gets an infusion as part of a drug trial that eventually failed.

Phil Gutis gets an infusion as part of a drug trial that eventually failed.

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I like to think that I continue to be fairly good with words, but more than a week has passed since my husband Tim and I hosted a Longest Day fundraising event at a local rowing studio and I am still completely unable to come up with the appropriate words to describe how I felt looking at all the people working so hard on our collective goal of rowing 250,000 meters before the day was done.

I remember one moment when I had just finished running around placing purple Mardi Gras beads around the necks of the rowers and I stood there looking out on the crowd and realizing that they were there for me. And to help find a cure or treatment for Alzheimer’s, the disease eating away at my brain.

Fundraising commitments for Phil Gutis’ Longest Day

I was overwhelmed and I just stood there looking out at the rowers. That inability to speak continued throughout the day. By the time we were all done, the folks in that studio had rowed an unbelievable 414,444 meters. (I managed to pull only 5,000 meters before my exhaustion from overthinking and over worrying and staying up late decorating with Tim took their toll.)

Also overwhelming was the $11,325 donated by more than 100 people to the Alzheimer’s Association as part of the Row2Remember. I never thought we’d raise that much and I once again can’t find the words to describe how appreciative I am to everyone who gave and rowed. (And, no, it’s not too late to donate! Click on the Row2Remember link and you’ll go directly to our page.)

As I’ve thought more about the day, I realized that we ticked off several of the boxes that scientists believe are important to help keep Alzheimer’s at bay. For while there is no effective treatment and certainly no cure for Alzheimer’s, doctors believe that there are many ways to keep your brain healthy.

Top on the list is exercise. And I’ll confirm that I most definitely feel better after an hour on the rower. I may be tired as hell but I can almost feel the blood flowing through my brain.

In fact, I have this mental image of good healthy red blood cells flushing through my brain, wiping away the plaques and tangles that Alzheimer’s causes. And, yes, I know it isn’t that simple nor easy. The exercise brain washing is just a fantasy but I do believe that exercise is helping keep the Alzheimer’s monster at a distance.

Also important is to stay socially engaged. Alzheimer’s can be a very isolating disease, causing those of us to stop working, shy away from crowded restaurants and other daunting experiences. I’ve been lucky to find a great community of people at OAR Studio near my home in Pennsylvania.

As I’ve noted it was amazing to see the OAR community turn out in droves to row that day. But I’ll be honest, I didn’t remember a lot of names of people who came out to OAR that day. (Names are particularly problematic these days.)

But even without names, I recognized faces. In addition to the folks from OAR, there were friends from Pennington CrossFit and Crossfit Summa. Tons of folks from Swan Creek Rowing Club. Family members. And a bunch of folks that I had never seen before.

Before the day was over, I had made new friends. I was honored by Congressman Brian Fitzpatrick who came by the studio and presented us with a proclamation and a flag that had been flown over the Capitol.

Rep. Brian Fitzpatrick, second from right, honors Phil Gutis, who is to his right.

Even more than a week later, I think I’m still in a bit of shock. Perhaps the appropriate words will come in time, but for now, a huge thank you to all that rowed, all that donated, all that promoted and to Tim for pulling a virtual all-nighter to get the studio decorated and the cupcakes baked and frosted with purple icing.

While we didn’t find a cure for Alzheimer’s that afternoon, I’m delighted that we were a small but important piece of the effort to stop this disease.

 

 

Phil Gutis

Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.

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