My Alzheimer’s Journey: Failing again

Three years ago, I was diagnosed with early-onset Alzheimer’s. I failed to score high enough on some fairly basic memory tests and therefore qualified for a drug trial. Subsequent genetic testing, MRIs and a PET scan supported that preliminary testing and I received 36 infusions of a test drug for Alzheimer’s.

This week, I failed again. But this time I failed to meet the basic threshold to qualify for an important longitudinal Alzheimer’s study. In other words, after very similar and basic memory tests, my brain was considered too healthy for me to participate in the Alzheimer’s Disease Neuroimaging Initiative 3.

So what happened? Am I cured of Alzheimer’s? Am I no longer living with mild cognitive impairment that typically leads to full blown Alzheimer’s? Should I now reject my monthly Social Security Disability checks and re-enter the workforce?

Unfortunately I don’t think that I’ve been cured of Alzheimer’s.

About an hour after returning home from the test facility, my husband Tim needed to remind me that we had once gone to an area dog park that a friend mentioned. And just moments later I was struggling to find the words to explain to Tim my feelings of being rejected from participating in the study.

Yes there is no doubt that I’ve recently been feeling better on a day-to-day basis. I’ve really kicked up my exercise levels and I’m convinced that the added blood flow to my brain is helping keep the Alzheimer’s monster in its cage.

But I’ve also had several memory and cognitive experiences in recent weeks that tell me that I’m not out of the woods. Episodes like completely forgetting that last year, Tim and I went to see our favorite political satirist in concert. Or becoming so confused trying to take a local train that I began to panic and needed to call my husband to come rescue me.

Combine those experiences and other similar situations, and I have no doubt that something serious is indeed wrong with my brain.

Which leads me to another pressing question: how could eligibility for a major scientific study be based on incredibly skimpy testing? The key determinant today was how much of a five-sentence story I could remember. And how much of it I could remember after a 30-minute break.

Apparently I did too well in remembering the details of the story, which was also combined with knowing the answers to basic questions such as what day of the week it was. That was a bit of a cheat since while waiting for our appointment I repeatedly tried to get a news app on my iPad to reload because it was only showing Tuesday’s news and I thought it was Wednesday.

Based on that really skimpy testing, I was summarily rejected for a study that would have involved five years of annual visits to a clinic. For the first year, I had consented to three different PET scans and a lumbar puncture as well as a battery of memory testing. Over the next four years, I’d have had continued lumbar punctures, memory testing, MRIs and additional PET scans.

Tim and I agreed to all of this because we think it is absolutely critical to participate in research that can help unlock the mysteries of Alzheimer’s, a progressive neurological disease that destroys brain cells. Currently there is no cure and not even a significant treatment regimen for Alzheimer’s, a disease that is destroying the lives of 5.5 million people in the United States alone. (To say nothing of the millions of their caregivers who are also struggling mightily with the consequences of the disease.)

And the treatment situation just became worse: Donepezil, which is commonly known as Aricept, is one of the drugs typically recommended to try to slow down Alzheimer’s symptoms. But a recent new study found that Aricept may lead to a condition known as rhabdomyolysis, which causes muscle breakdown.

Trying new drugs

A year or so ago, worried about continued deterioration of my cognitive abilities and memory, I tried Aricept. Horrible nightmares, headaches and loss of bowel control quickly put an end to that experiment.

And then earlier this year the drug trial I had enrolled in was canceled because a “futility analysis” demonstrated that the test drug (called Aducanumab) was unlikely to work.

Since then, I’ve explored other possible trials but nothing has felt right, so I agreed to participate in the ADNI3 study, which is designed to “look at the relationship between clinical, cognitive, imaging, genetic and biomarker tests to understand the full spectrum of Alzheimer’s disease from its earliest stages.”

Data from the observational study will be used in the development of future research studies that will focus on the treatment of Alzheimer’s disease, which is exactly what I have long hoped to be part of.

So, what now? Recent events have proven to me that I do indeed have Alzheimer’s. Perhaps the rejection from the study should show me that I’m successfully resisting Alzheimer’s through exercise, weight loss and careful attention to various biomarkers such as blood pressure, cholesterol and blood sugar.

So I’ll continue to ramp up the exercise and spend more time on the indoor rower — I’m fairly close to having rowed a million meters since last December. And I’ll continue to count calories; I’m down about 20 pounds from my recent high of 224 last fall.

I will also keep advocating for additional Alzheimer’s research funding so scientists can finally begin to identify a treatment or cure for Alzheimer’s. That’s even if my moment-to-moment and day-to-day cognitive abilities preclude me from being part of it.

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.