Diagnosed at 54, fighting to keep Alzheimer’s fade away
NEW HOPE, Pa. — The distractions of everyday life can make everyone forgetful at times. We misplace car keys or lose the television remote control, only to find it hiding behind the sofa pillows.
Words, too, can get lost sometimes in the pillowy recesses of our brains.
Phil Gutis knows that all too well. Words used to come easy to him. After graduating from Penn State, he got a job as a copy boy at the New York Times and worked his way up to reporter at the prestigious publication.
The Philadelphia native later worked for the American Civil Liberties Union and other advocacy organizations, focusing his communication skills on the social issues of the day. But when he got to his 50s, words and the memories associated with them started to fade.
He could remember going to the Bucks County Playhouse, but not what he had seen. He knew he worked on his home’s landscape but couldn’t describe the improvements to his husband, Tim Weaver.
“For the life of me, I couldn’t get the words out to tell him what I had done … I went into my room and cried.”
Five years ago, he found the reason for his forgetfulness. He has early-onset Alzheimer’s Disease, a devastating diagnosis for which there currently is no cure.
Gutis, of Solebury, was diagnosed at 54. He knew that people get forgetful as they age, but this felt different.
“I don’t remember what caused me to be concerned,” he said. “Something wasn’t right.”
His doctor at the time told him nothing was wrong, just normal cognitive decline. But Alzheimer’s runs in his family and his sister told him of a clinical trial for a new drug to help those with the early onset.
A cognitive test to be admitted into the trial would prove concerning. A score of 85 or above was considered normal; he scored in the low to mid 70s. Further genetic testing along with an MRI and PET scan showed the buildup of the tell-tale plaques and tangles in his brain.
“Someone emailed him, ‘Congratulations, you’re going to be accepted into the clinical trial,’” Weaver recalled as the men sat on their back patio last week.
“That was an emotional, trying moment for my husband and I,” Gutis said. “I remember crying, but in some ways it was a relief. I wasn’t nuts. Something clearly wasn’t right.”
Though he is participating in trials for the drug, aducanumab, that he thinks has helped him, a Food and Drug Administration advisory board recently voted against giving the pharmaceutical firm Biogen the right to license the drug because the trials did not all agree it was helpful. The FDA plans to make a decision by March.
Gutis and other advocates are hopeful the FDA will approve its continued use while clinical trials of the drug and others to treat Alzheimer’s continue. Biogen describes the drug as “the first treatment to meaningfully change the course of the disease for individuals with Alzheimer’s”
The Alzheimer’s Association, an advocacy organization for those battling the disease and their caregivers, wrote to the advisory panel in October in support of the research because there currently are more than 5 million Americans living with Alzheimer’s and by 2050, the number is expected to rise to 13.8 million.
In the meantime, patients and their families live every day, waiting and holding on to hope as memories fade.
The Alzheimer’s Association, an advocacy organization for those battling the disease and their caregivers, wrote to the advisory panel in October in support of the research because there currently are more than 5 million Americans living with Alzheimer’s and by 2050, the number is expected to rise to 13.8 million.
Gutis and Weaver have been living in Solebury for 16 years.
They decided about three years ago to get married, in part so Weaver could more easily participate in Gutis’ medical care. They first met in Washington, D.C. Weaver, who’s from Florida, is a graphic designer but for 10 years has been running an in-home pet care and dog walking service, though his business has declined by 80% since the coronavirus has forced people to work from home, no longer needing him to tend to their pets.
Gutis is now on disability and for a while, didn’t drive. He found he was getting afraid to go out the more he sat at home, so he took up driving again during daylight hours. It’s hard to get around in Solebury without a car and there aren’t sidewalks on his street, but Gutis loves their home on a fenced-in, tree-covered hill where their three dogs — Sadie, Beatrice and Charly — can roam free and play with Max, their cat.
According to the Alzheimer’s Association, the cause of the disease is not fully apparent but most patients develop an extensive buildup of beta-amyloid plaques made of one protein and tangles of another protein called tau. Eventually, the build-ups can destroy brain cells and overtake not only memory but other vital areas of the brain, leading to a fatal decline. Most patients are older but anyone diagnosed before age 65 is considered to have early-onset dementia. The disease was discovered by the German psychiatrist Alois Alzheimer about a century ago.
So far, there has not been a cure developed but Gutis thinks the aducanumab he has been taking intravenously monthly for the past five years is keeping the plaques at bay. “I believe it has helped me,” he said.
“I think it has slowed his progress,” Weaver added. “It’s not a cure.”
Gutis sees his neurologist in the Penn Memory Center in Philadelphia. Experts have told him he could live 20 to 30 years, he said, yet he knows his life has been curtailed by Alzheimer’s.
“I went from a busy executive to a person on disability — not only lost my memory but my identity.”
And both Gutis and the Alzheimer’s Association said that the disease not only affects those with it, but their caregivers.
In addition to the emotional pain in seeing a loved one diminished, many caregivers take on multiple tasks to help a person with advanced Alzheimer’s stay healthy and safe. They often do so at the expense of their own health, financial stability and emotional well-being, said Joanne Pike, the association’s chief strategy officer in a letter to the FDA urging approval for aducanumab.
“In 2019 alone, caregivers of people with dementia provided an estimated 18.6 billion hours of unpaid assistance,” Pike pointed out.
Weaver has picked Gutis up at a train station when he ended up in Trenton coming home from Philadelphia and he has had to bite his tongue at times when Gutis forgets something that had recently taken place. One morning he didn’t remember that he had already seen Max.
“You rationalize it. ‘You didn’t have your coffee yet,’” Weaver told Gutis, but inside, “It alarmed me,” he said.
The two men have raised more than $13,000 for the Alzheimer’s Association and praise the “incredible work that its staff and volunteers do in both trying to find a cure and supporting those who are living with the disease,” said Gutis. He now serves on the board of the local Delaware Valley Chapter and planned to participate in the Philadelphia Walk to End Alzheimer’s, billed as the largest event of its kind in the country.
Gutis still writes thoughtful essays for the news media, at his own pace. And he’s a senior reporter for BeingPatient.com, a website devoted to Alzheimer’s research and patient information.
Sometimes Gutis will wake up and know it’s going to be a bad day, or at least a very long one. Other times, he gets in front of his computer and the words flow freely.
“It’s not a straight journey of decline,” he said of his challenge. “It’s peaks and valleys, peaks and valleys.”
“The bottom line is stay active. Stay engaged. Keep exercising. And that’s not just for people with Alzheimer’s. That’s for everybody.”