Editors' note: Each day during the holidays, Crosscut will revisit top stories from the last year in a specific category. Today's focus is health. This article was originally published October 3, 2012.
The trouble started for Myriam Marquez in March of 2009. One evening while driving home from Mount Vernon where she worked as an attorney, Marquez came to the same four-way stop she always crossed in Stanwood, at Woodland Road and 70th Avenue. Only this time things were different. The roads looked unfamiliar. She was lost despite having driven this way home almost daily.
“I came to that stop and all of the sudden I didn’t know where I was,” Marquez remembers. “I panicked. I picked up my cell phone and called my daughter. But as I was talking to her I realized where I was and said, ‘Never mind. I know where I am,’ and I made the right and went home.”
Marquez always knew Alzheimer’s disease was common in her family, but since most of her relatives started showing signs in their 40s, she thought she was safe, having reached her 60s.
The following week would prove to be a relief. She went to her doctor and underwent a variety of tests — PET scans, MRI, memory tests, and blood work. Her doctor informed her that, according to the tests, nothing appeared to be amiss.
But over time, Marquez would find herself more and more often in unfamiliar territory. Things finally came to a head at a family Thanksgiving. While getting ready to leave her daughter’s house, Marquez went to grab the doorknob when suddenly her whereabouts escaped her again.
“The next week I went to my doctor and I said ‘I know I’ve got it,’ ” Marquez said.
Subsequent DNA testing would confirm what she suspected: In April 2010, when she was 62 years old, Myriam Marquez was diagnosed with younger-onset Alzheimer’s.
Younger-onset Alzheimer’s distinguishes itself from traditional Alzheimer's in that symptoms of dementia start to manifest before a person reaches 65. It is quite rare, affecting only 5 to 10 percent of all Alzheimer’s cases. Yet nearly half of all younger-onset Alzheimer's is familial, in that a family member is genetically predisposed to it.
And in the Marquez family, it is common. Marquez's father was one of 13 siblings, six of whom died with symptoms of AD, and two of Myriam’s cousins are currently in the late stages of the disease. Marquez possesses the Puerto Rican mutation of the Presenilin 1 gene, one of the four genes that are known to cause AD with clusters found predominately in Puerto Rico, New York, and Hawaii.
The causes of Alzheimer’s disease (AD) are still unknown. But doctors and pathologists now understand that deposits of a fibrous protein called amyloids build up in sections of brain tissue forming plaques throughout memory centers. Over time, the buildup becomes more and more widespread, resulting in things like memory loss, aphasia, and mood swings. Eventually, normal bodily functions are lost as the brain shuts down completely, resulting in death.
“AD is a complex disease,” says Dr. Suman Jayadev, assistant professor of neurology at the University of Washington. “Some people have the rare form of Alzheimer's disease caused by a mutation in just one gene. But most people have the form of AD that is likely a consequence of the interactions of many genes and our environment.
“Fortunately we know a lot more about AD than we did 25 years ago when we were starting to identify the key players from a protein and gene standpoint.”
According to the Western and Central Washington chapter of the Alzheimer’s Association, there are 150,000 individuals over the age of 65 living with the disease in Washington. (The figures on younger-onset AD are not yet available.) Countrywide, some 5.4 million are living with it, with those numbers expected to double by 2025 as baby boomers age. As of March 2012, Alzheimer’s annual costs to Medicare and Medicaid totals $140 billion and by 2050 could reach $1.1 trillion.
“There is a lot of hope, however,” says Keri Pollock, communications director for Alzheimer’s Association of Western and Central Washington. “Studies have shown that here is a direct correlation between the amount of money you put into research and then finding a cure or treatments that will stop progression.”
In May of 2012, the National Institutes of Health released a plan to aid the fight against Alzheimer's. In January 2011, President Barack Obama signed the National Alzheimer’s Project Act into law, allocating a $100 million increase for support of AD research, public awareness, provider education programs, caregiver support, and data collection.
But clinical research needs willing participants, and as Dr. Jayadev points out, it is difficult to study the living tissue of Alzheimer’s patients, as most comes from autopsy samples. Post-mortem samples give insight into later periods of AD but hardly a clear understanding of early stages or causes.
Alzheimer’s is the most common form of dementia and the sixth leading cause of death in the United States, yet public awareness of it and its effects on human behavior are not commonly known.
Recently, three Seattle police officers were involved in the fatal shooting of 77-year-old Henry Lee Sr., who suffered from dementia and Alzheimer’s. Officers responding to the call that Lee made about a prowler he thought to be outside his house reportedly had not been informed that the elderly Rainier View resident suffered from dementia or had any medical condition. When Lee pointed a gun at the officers, it prompted them to open fire. The incident also lends insight into the number of senior citizens who suffer from some form of dementia but do not have an identifiable caregiver. And in Washington state, it is estimated that 22,000 people who suffer from Alzheimer’s live alone.
“It’s like it’s something shameful,” Marquez says, referring to the stigma of disease. “People hide it. Family members hide it. They say things like ‘oh she’s just getting older. She’s forgetful.’ As long as that continues, there’s not going to be any funding to find a cure, to stop the progression.
“One of the problems with younger-onset Alzheimer’s is that doctors sometimes don’t consider it to be dementia. Sometimes it takes someone with persistence, or someone who has an automobile accident, or something terrible happens for someone to say, ‘Hey, something is really wrong here.’ ”
While there are no known prevention methods or a cure yet for Alzheimer’s, recent studies by the Alzheimer’s Association and the federal Centers for Disease Control have pointed to evidence linking vascular health and physical activity to cognitive well being.
Maintaining an active mind is something Marquez believes staved off what some of her family came down with earlier in life. “I went to college, to law school. I used my brain a lot in my practice of law. And it’s lifestyle, staying physically active. I’ve worked out most of my life and [was] socially active. It’s my belief that that’s the reason why mine was delayed.”
When Marquez was diagnosed two years ago, she told the director of the public defenders office in Skagit County that she had the disease. He responded by telling her that, regrettably, he had to let her go. “As he’s saying this, I’m making a decision: ‘Do I want to fight this or do I want to move on?’ ” Marquez recalls. “I’ve go four kids and seven grand kids, and in that instant I decided two things, that I wanted to do everything I could for my kids and grandkids, and everyone else, to find a cure, and if I have a limited amount of time, I want to live it to the hilt.”
Her decision to leave law and become a stalwart for the Alzheimer's Association would redirect the course of her life. She took off to India for a month and then on to Peru. “Just doing things I’ve always wanted to do,” she explains.
Since then, she has become very active inside the Alzheimer’s Association. She is on the regional chapter's board of directors, a national association advisory board on early stage Alzheimer's, and has marched on Capitol Hill in Washington, D.C., to spread awareness. Her persistence and success within the association is something she attributes to her years of practicing law. In addition, she also involves herself in tests for the Dominantly Inherited Alzheimer’s Network (DIAN) studies at UCLA as a research aid.
Although the tests and results are confidential, she notes that they are excruciatingly thorough, sometimes even painful: PET scans, CAT scans, MRIs, memory testing, psychoanalytic testing, and spinal taps. “Anything for the cause!” Marquez says.
The path Marquez has chosen is one some believe will lead to an eventual cure. Pollock of the Alzheimer's Association says, "It's not only the awareness building, but also getting people healthy and diagnosed individuals involved with clinical trials, because the more people we have involved in the trials the sooner we'll get to that magical bullet or that cure or that treatment."
For Marquez, the choice to give up law and fight for a cure was never a difficult one to make.
“I had a choice to either spend the rest of my life being miserable until I die,” Marquez notes. "Or I could say, 'Oh goodie, another fucking opportunity to develop, to grow.' " She chose growth, for herself and for the cause of progress against a disease.