The author as a child with her father in 1981, before he was diagnosed with Alzheimer's.
Editor's Note: A team of researchers in Italy recently used artificial intelligence and machine learning to diagnose Alzheimer's disease on a brain scan an entire decade before symptoms show up in the patient. While some people argue that early detection is critical, others believe the knowledge would do more harm than good. LeapsMag invited contributors with opposite opinions to share their perspectives.
Alzheimer's doesn't run in my family. When my father was diagnosed at the age of 58, we looked at his familial history. Both his parents lived into their late 80's. All of their surviving siblings were similarly long-lived and none had had Alzheimer's or any related dementias. My dad had spent 20 years working for the United Nations in the 60's and 70's in Africa. He was convinced that the Alzheimer's had come from his time spent in dodgy mines where he was exposed without the proper protections to all kinds of chemical processes.
Maybe that was true. Maybe it wasn't. The theory that metals, particularly aluminum, is an environmental factor leading to Alzheimer's has been around for a while. It's mostly been debunked, but clearly something is causing this epidemic as the vast majority of the cases in the world today are age-related. But no one knows what the trigger is, nor are we close to knowing.
If my father had had the Alzheimer's gene, I would go get myself checked for it. If some new MRI were commercially available to scan my brain and let me know if I was developing Alzheimer's, I would also take that test. There are four reasons why.
First, studies have shown that lifestyle has a major impact on the disease. I already run three miles a day. I eat relatively healthily. But like anyone, I don't live strictly on boiled chicken and broccoli. And I definitely enjoy a glass of wine or two. If I knew I had a propensity for the disease, or was developing it, I would be more diligent. I would eat my broccoli and cut out my wine. Life would be less fun, but I'd get more life and that's what's important.
The last picture taken of the author with her father before his death, in 2015.
Secondly, I would also have time to create an end-of-life plan the way my father did not. He told me repeatedly early on in his diagnosis that he did not want to live when he no longer knew me, when he became a burden, when he couldn't feed or bathe himself. I did my best in his final years to help him die quicker: I know that was what he wanted. But, given U.S. laws, all that meant was taking him off his heart and stroke medications and letting him eat anything he wanted, no matter how unhealthy. Knowing what's to come, having seen him go through it, I might consider moving to Belgium, which has begun to allow assisted suicide of those living with Alzheimer's and dementia if they can clearly state their intentions early on in the disease when they still have clarity of mind.
Next, I could help. Right now, there are dozens of Alzheimer's and dementia studies in the works. They are short thousands of willing test subjects. One of the top barriers to learning what's triggering the disease, and finding a cure, is populating these studies. So, knowing would make me a stronger candidate and would potentially help others down the road.
Finally, it would change my priorities. My father died the longest death possible: he succumbed last year more than 15 years after his diagnosis. My mother died the quickest possible way: she had a stress-related brain aneurysm 10 years after my father's diagnosis. Caring for him was too much for her and aneurysms ran in her family; her mother died of one as well. I already get a scan once every five years to see if I'm developing a brain aneurysm. If I am, odds are only 66% that they can operate on it—some aneurysms develop much too deep in the brain to operate, like my mother's.
Would she have wanted to know? Even though the aneurysm in her case was inoperable? I'm not sure. But I imagine if she had known, she would've lived her final years differently. She might have taken that trip to Alaska that she debated but thought was too expensive. She might have gotten organized earlier to make out a will so I wasn't left with chaos in the wake of her death; we'd planned for my father's death, knowing he was ill, but not my mother's. And she might have finally gotten around to dictating her story to me, as she'd always promised me she would when she found the time.
Telling my father's story at the end of his life helped his care.
With my startup MemoryWell, I spend my life now collecting senior stories before they are lost, in part because telling my father's story at the end of his life helped his care. But it's also in part for the story I lost with my mother.
If I knew that my time was limited, I'd not worry so much about saving for retirement. I'd make progress on my bucket list: hike Machu Picchu, scuba dive the Maldives, or raft the Grand Canyon. I'd tell my loved ones as much as I can in my time remaining how much they mean to me. And I would spend more time writing my own story to pass it down—finally finishing the book I've been working on. Maybe it's the writer in me, or maybe it's that I don't have kids of my own yet to carry on a legacy, but I'd want my story to be known, to have others learn from my experiences. And that's the biggest gift knowing would give me.
Editor's Note: Consider the other side of the argument here.
Entomologist Jessica Ware is using new technologies to identify insect species in a changing climate. She shares her suggestions for how we can live harmoniously with creeper crawlers everywhere.
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Entomologist Jessica Ware
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Maybe it feels like a core human instinct to demonize bugs as gross. We seem to try to eradicate them in every way possible, whether that’s with poison, or getting out our blood thirst by stomping them whenever they creep and crawl into sight.
But where did our fear of bugs really come from? Jessica makes a compelling case that a lot of it is cultural, rather than in-born, and we should be following the lead of other cultures that have learned to live with and appreciate bugs.
The truth is that a healthy planet depends on insects. You may feel stung by that news if you hate bugs. Reality bites.
Jessica and I talk about whether learning to live with insects should include eating them and gene editing them so they don’t transmit viruses. She also tells me about her important research into using genomic tools to track bugs in the wild to figure out why and how we’ve lost 50 percent of the insect population since 1970 according to some estimates – bad news because the ecosystems that make up the planet heavily depend on insects. Jessica is leading the way to better understand what’s causing these declines in order to start reversing these trends to save the insects and to save ourselves.
A company called Second Sight made an implant that partially restored vision to people who'd been blind for decades. But when Second Sight pivoted, it stopped servicing its product, leaving many in the dark.
The Argus II uses the implant and a video camera embedded in a special pair of glasses to provide limited vision to those with retinitis pigmentosa, a genetic disease that causes cells in the retina to deteriorate. The camera feeds information to the implant, which sends electrical impulses into the retina to recapitulate what the camera sees. The impulses appear in the Argus II as a 60-pixel grid of blacks, grays and whites in the user’s eye that can render rough outlines of objects and their motion.
Smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Ross Doerr, a retired disability rights attorney in Maine who received an Argus II in 2019, describes the field of vision as the equivalent of an index card held at arm’s length. Perk often brings objects close to his face to decipher them. Moreover, users must swivel their heads to take in visual data; moving their eyeballs does not work.
Despite its limitations, the Argus II beats the alternative. Perk no longer relies on his guide dog. Doerr was uplifted when he was able to see the outlines of Christmas trees at a holiday show.
“The fairy godmother department sort of reaches out and taps you on the shoulder once in a while,” Doerr says of his implant, which came about purely by chance. A surgeon treating his cataracts was partnered with the son of another surgeon who was implanting the devices, and he was referred.
Doerr had no reason to believe the shower of fairy dust wouldn’t continue. Second Sight held out promises that the Argus II recipients’ vision would gradually improve through upgrades to much higher pixel densities. The ability to recognize individual faces was even touted as a possibility. In the winter of 2020, Doerr was preparing to travel across the U.S. to Second Sight’s headquarters to receive an upgrade. But then COVID-19 descended, and the trip was canceled.
The pandemic also hit Second Sight’s bottom line. Doerr found out about its tribulations only from one of the company’s vision therapists, who told him the entire department was being laid off. Second Sight cut nearly 80% of its workforce in March 2020 and announced it would wind down operations.
Ross Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market.
Jan Doerr
Second Sight’s implosion left some 350 Argus recipients in the metaphorical dark about what to do if their implants failed. Skeleton staff seem to have rarely responded to queries from their customers, at least based on the experiences of Perk and Doerr. And some recipients have unfortunately returned to the actual dark as well, as reports have surfaced of Argus II failures due to aging or worn-down parts.
Product support for complex products is remarkably uneven. Although the iconic Ford Mustang ceased production in the late 1960s, its parts market is so robust that it’s theoretically possible to assemble a new vehicle from recently crafted components. Conversely, smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. Consumers have accepted both extremes.
But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Margaret McLean, a senior fellow at the Markkula Center for Applied Ethics at Santa Clara University in California, notes companies like Second Sight have a greater obligation for product support than other consumer product ventures.
“In this particular case, you have a great deal of risk that is involved in using this device, the implant, and the after care of this device,” she says. “You cannot, like with your car, decide that ‘I don’t like my Mustang anymore,’ and go out and buy a Corvette.”
And, whether the Argus II implant works or not, its physical presence can impact critical medical decisions. Doerr’s doctor wanted him to undergo an MRI to assist in diagnosing attacks of vertigo. But the physician was concerned his implant might interfere. With the latest available manufacturer advisories on his implant nearly a decade old, the procedure was held up. Doerr spent months importuning Second Sight through phone calls, emails and Facebook postings to learn if his implant was contraindicated with MRIs, which he never received. Although the cause of his vertigo was found without an MRI, Doerr was hardly assured.
“Put that into context for a minute. I get into a serious car accident. I end up in the emergency room, and I have a tag saying I have an implanted medical device,” he says. “You can’t do an MRI until you get the proper information from the company. Who’s going to answer the phone?”
Second Sight’s management did answer the call to revamp its business. It netted nearly $78 million through a private stock placement and an initial public offering last year. At the end of 2021, Second Sight had nearly $70 million in cash on hand, according to a recent filing with the Securities and Exchange Commission.
And while the Argus II is still touted at length on Second Sight’s home page, it appears little of its corporate coffers are earmarked toward its support. These days, the company is focused on obtaining federal approvals for Orion, a new implant that would go directly into the recipient’s brain and could be used to remedy blindness from a variety of causes. It obtained a $6.4 million grant from the National Institutes of Health in May 2021 to help develop Orion.
Presented with a list of written questions by email, Second Sight’s spokesperson, Dave Gentry of the investor relations firm Red Chip Companies, copied a subordinate with an abrupt message to “please handle.” That was the only response from a company representative. A call to Second Sight acting chief executive officer Scott Dunbar went unreturned.
Whether or not the Orion succeeds remains to be seen. The company’s SEC filings suggest a viable and FDA-approved device is years away, and that operational losses are expected for the “foreseeable future.” Second Sight reported zero revenue in 2020 or 2021.
Moreover, the experiences of the Argus II recipients could color the reception of future Second Sight products. Doerr notes that his insurer paid nearly $500,000 to implant his device and for training on how to use it.
“What’s the insurance industry going to say the next time this crops up?” Doerr asks, noting that the company’s reputation is “completely shot” with the recipients of its implants.
Perk, who made speeches to praise the Argus II and is still featured in a video on the Second Sight website, says he also no longer supports the company.
Jeroen Perk, an investigator for the Dutch customs service, cried for joy after partially regaining his sight, but he no longer trusts Second Sight, the company that provided his implant.
Nanda Perk
Nevertheless, Perk remains highly reliant on the technology. When he dropped an external component of his device in late 2020 and it broke, Perk briefly debated whether to remain blind or find a way to get his Argus II working again. Three months later, he was able to revive it by crowdsourcing parts, primarily from surgeons with spare components or other Argus II recipients who no longer use their devices. Perk now has several spare parts in reserve in case of future breakdowns.
Despite the frantic efforts to retain what little sight he has, Perk has no regrets about having the device implanted. And while he no longer trusts Second Sight, he is looking forward to possibly obtaining more advanced implants from companies in the Netherlands and Australia working on their own products.
Doerr suggests that biotech firms whose implants are distributed globally be bound to some sort of international treaty requiring them to service their products in perpetuity. Such treaties are still applied to the salvage rights for ships that sunk centuries ago, he notes.
“I think that in a global tech economy, that would be a good thing,” says McLean, the fellow at Santa Clara, “but I am not optimistic about it in the near term. Business incentives push toward return on share to stockholders, not to patients and other stakeholders. We likely need to rely on some combination of corporately responsibility…and [international] government regulation. It’s tough—the Paris Climate Accord implementation at a slow walk comes to mind.”
Unlike Perk, Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market. At 70, Doerr says he does not have the time or energy to hold the company more accountable. And with Second Sight having gone through a considerable corporate reorganization, Doerr believes a lawsuit to compel it to better serve its Argus recipients would be nothing but an extremely costly longshot.
“It’s corporate America at its best,” he observes.