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.
On the left, a Hermès bag made using fine mycelium as a leather alternative, made in partnership with the biotech company MycoWorks; on right, a sheet of mycelium "leather."
The Adidas Stan Smith Mylo shoe, made with an alternative leather grown from mycelium, to be released in 2022.
Adidas
Hermès has held presales on the new bag, says Philip Ross, co-founder and chief technology officer of MycoWorks, a San Francisco Bay area firm whose materials constituted the design. By year-end, Ross expects several more clients to debut mycelium-based merchandise. With "comparable qualities to luxury leather," mycelium can be molded to engineer "all the different verticals within fashion," he says, particularly footwear and accessories.
More than a half-dozen trailblazers are fine-tuning mycelium to create next-generation leather materials, according to the Material Innovation Initiative, a nonprofit advocating for animal-free materials in the fashion, automotive, and home-goods industries. These high-performance products can supersede items derived from leather, silk, down, fur, wool, and exotic skins, says A. Sydney Gladman, the institute's chief scientific officer.
That's only the beginning of mycelium's untapped prowess. "We expect to see an uptick in commercial leather alternative applications for mycelium-based materials as companies refine their R&D [research and development] and scale up," Gladman says, adding that "technological innovation and untapped natural materials have the potential to transform the materials industry and solve the enormous environmental challenges it faces."
In fewer than 10 days in indoor agricultural farms, "we grow large slabs of mycelium that are many feet wide and long. We are not confined to the shape or geometry of an animal."
Reducing our carbon footprint becomes possible because mycelium can flourish in indoor farms, using agricultural waste as feedstock and emitting inherently low greenhouse gas emissions. Carbon dioxide is the primary greenhouse gas. "We often think that when plant tissues like wood rot, that they go from something to nothing," says Jonathan Schilling, professor of plant and microbial biology at the University of Minnesota and a member of MycoWorks' Scientific Advisory Board.
But that assumption doesn't hold true for all carbon in plant tissues. When the fungi dominating the decomposition of plants fulfill their function, they transform a large portion of carbon into fungal biomass, Schilling says. That, in turn, ends up in the soil, with mycelium forming a network underneath that traps the carbon.
Unlike the large amounts of fossil fuels needed to produce styrofoam, leather and plastic, less fuel-intensive processing is involved in creating similar materials with a fungal organism. While some fungi consist of a single cell, others are multicellular and develop as very fine threadlike structures. A mass of them collectively forms a "mycelium" that can be either loose and low density or tightly packed and high density. "When these fungi grow at extremely high density," Schilling explains, "they can take on the feel of a solid material such as styrofoam, leather or even plastic."
Tunable and supple in the cultivation process, mycelium is also reliably sturdy in composition. "We believe that mycelium has some unique attributes that differentiate it from plastic-based and animal-derived products," says Gavin McIntyre, who co-founded Ecovative Design, an upstate New York-based biomaterials company, in 2007 with the goal of displacing some environmentally burdensome materials and making "a meaningful impact on our planet."
After inventing a type of mushroom-based packaging for all sorts of goods, in 2013 the firm ventured into manufacturing mycelium that can be adapted for textiles, he says, because mushrooms are "nature's recycling system."
The company aims for its material—which is "so tough and tenacious" that it doesn't require any plastic add-on as reinforcement—to be generally accessible from a pricing standpoint and not confined to a luxury space. The cost, McIntyre says, would approach that of bovine leather, not the more upscale varieties of lamb and goat skins.
Already, production has taken off by leaps and bounds. In fewer than 10 days in indoor agricultural farms, "we grow large slabs of mycelium that are many feet wide and long," he says. "We are not confined to the shape or geometry of an animal," so there's a much lower scrap rate.
Decreasing the scrap rate is a major selling point. "Our customers can order the pieces to the way that they want them, and there is almost no waste in the processing," explains Ross of MycoWorks. "We can make ours thinner or thicker," depending on a client's specific needs. Growing materials locally also results in a reduction in transportation, shipping and other supply chain costs, he says.
Yet another advantage to making things out of mycelium is its biodegradability at the end of an item's lifecycle. When a pair of old sneakers lands in a compost pile or landfill, it decomposes thanks to microbial processes that, once again, involve fungi. "It is cool to think that the same organism used to create a product can also be what recycles it, perhaps building something else useful in the same act," says biologist Schilling. That amounts to "more than a nice business model—it is a window into how sustainability works in nature."
A product can be called "sustainable" if it's biodegradable, leaves a minimal carbon footprint during production, and is also profitable, says Preeti Arya, an assistant professor at the Fashion Institute of Technology in New York City and faculty adviser to a student club of the American Association of Textile Chemists and Colorists.
On the opposite end of the spectrum, products composed of petroleum-based polymers don't biodegrade—they break down into smaller pieces or even particles. These remnants pollute landfills, oceans and rivers, contaminating edible fish and eventually contributing to the growth of benign and cancerous tumors in humans, Arya says.
Commending the steps a few designers have taken toward bringing more environmentally conscious merchandise to consumers, she says, "I'm glad that they took the initiative because others also will try to be part of this competition toward sustainability." And consumers will take notice. "The more people become aware, the more these brands will start acting on it."
A further shift toward mycelium-based products has the capability to reap tremendous environmental dividends, says Drew Endy, associate chair of bioengineering at Stanford University and president of the BioBricks Foundation, which focuses on biotechnology in the public interest.
The continued development of "leather surrogates on a scaled and sustainable basis will provide the greatest benefit to the greatest number of people, in perpetuity," Endy says. "Transitioning the production of leather goods from a process that involves the industrial-scale slaughter of vertebrate mammals to a process that instead uses renewable fungal-based manufacturing will be more just."