Voice banking
The practice is called “voice banking.” Advances in transcription and artificial intelligence now allow people with ALS and other disorders to record their voices and create lifelike versions for later use when they’ll no longer have the ability to speak.
Brady, who lives with his wife, Carla HillBrady, is now at that point. When he wants to speak, he stares at a computer using a device that tracks the movement of his eyes to type out his thoughts. Then software processes that into spoken language using his recorded words.
The sound that produces is strikingly like Brady’s old voice, if a bit flatter, with less inflection.
The simulacrum is good enough that – five years after his voice began degrading – his own mother can’t tell the difference on the phone.
“My mom was thrilled to notice that my voice was sounding better,” Brady wrote recently in an email. “She took that to mean that I am doing better. I did not tell her that it was my synthetic voice. My 91-year old mom doesn’t need to worry about me during her remaining time with my family. I’ll be OK.”
It has been transformative for a man who is not sure how much longer ALS will allow him to be with the people he loves.
First sign of trouble
ALS affects an estimated 7.7 out of every 100,000 people in the U.S., according to the Muscular Dystrophy Association, which says between 15,000 and 20,000 Americans currently live with the disease. ALS affects all races and ethnicities and is 20% more common among men.
From the time of diagnosis, most patients die within three to five years, the association says.
For Brady, the first sign of trouble was a subtle one − a slight slurring of speech in November 2019.
“After a few weeks of the slurring, my wife urged me to go see our doctor,” he said in a recent interview. “In early 2020, my voice became slightly hoarse.“
By July, doctors diagnosed him with ALS. It was the early days of the coronavirus pandemic. People who noticed the hoarseness of his voice asked about COVID. But in truth, it was a sign of an aggressive disease progressing.
“The quality of my speech was in a slow, steady decline,” Brady said.
These days, only Brady’s wife and his nurse understand him when he uses his own voice, which he can now muster only in short, staccato phrases.
“I no longer answer my phone and I no longer proactively attempt to speak with anyone other than my wife or nurse,” he said.
How to bank your voice
People diagnosed with ALS are advised to record their voices as soon as possible because of how quickly they can deteriorate, said Debra Zeitlin, a speech pathologist and clinical director at Brooklyn-based Bridging Voice, a not-for-profit that provides free services to people with the disease, including those in New Jersey.
Brady chose an iPhone app called the Voice Keeper and, shortly after being diagnosed, began the emotional process of preserving his voice. He spent 20 minutes a day over the course of a week recording phrases to capture the essence of his speech before ALS erased it.
His overall physical condition had begun to deteriorate as well. Activities he once took for granted, like changing clothes, posed significant challenges. Simple communication became laborious.
“Each day I have to rely more and more on others for basic things most people take for granted − eating, brushing my teeth, getting in and out of a car, etc.,” he wrote. “To have my own voice is one small piece of independence that I retain.”
A career educator and entrepreneur
Before ALS reshaped his world, Brady had a life and career of which he was proud. Parents to eight children, Brady and his wife also own a home rental business. For two decades, he’d also been involved in the nonprofit education sector, opening a series of charter schools in parts of Trenton, Camden and Philadelphia.
Before Brady’s voice was stolen, he recorded a series of YouTube videos touting the effort’s success.
His daily life now provides a sharp contrast to that dynamic past. But even in silence, one can feel the power that family gives Brady.
On a recent visit to his home, Carla stood behind him, patiently waiting for her husband’s eyes to pick out on a screen the words he could no longer speak.
ALS can’t take everything, they insisted. “We are going to have ALS during the week, but on Saturdays and Sundays we are going to take off from ALS,” Brady said in a 2022 video he recorded with his wife for the Philadelphia-based Jefferson Weinberg ALS Center.
Cherishing their time
Despite Brady’s growing physical limitations, they cherish the increased time they have together since he can no longer work. There’s more opportunity for travel, more time to enjoy the home they bought for retirement in Mazatlán, Mexico.
“All of those things have been positive changes,” said Carla Hill-Brady in the ALS Center video. Doing as many things as they can while her husband is still able has been one positive out of the ordeal, she said.
There’s yet another way in which Brady considers himself “lucky.” All of his children were adults by the time of his diagnosis, he said.
Brady doesn’t see his story as one of just loss and struggle. It’s about resilience and adaptation and a family’s love.
One final trip?
As for his future, his doctors would not give him a “specific timeline,” he said. He estimates someone at his stage of ALS “could reasonably expect” to live between four and 16 more months but he hopes a planned tracheostomy may improve his breathing and prolong his life by years.
Unfortunately, his doctor has also told him to stop traveling.
“We are in Mexico now for the next three weeks, for what we believe, sadly, will be our final visit here,” he wrote earlier this week. There’s one “bucket list” item on his list he’s still looking forward to.
“The path of the April 8 total solar eclipse passes directly over Mazatlán, Mexico. I may defy the doctor’s orders and we may come back one final time to see it,” he said. “When I was diagnosed, my wife and I committed ourselves to living every available moment. Experiencing a total solar eclipse in the city we love, I think, fits the definition.”
Sarah Bowman
Retired federal Environmental Protection Agency scientist Larry Jensen has known about the radioactive risks of coal ash for years. He did a study more than 15 years ago in a northern Indiana town essentially built on the waste. h Jensen sent a report to his former EPA colleagues, but never got a response. h Now, the agency is finally recognizing the dangers posed by radium in coal ash, the byproduct of burning coal for electricity. It says the cancer risk from exposure to the material widely used for construction fill may be as much as 35 times higher than previously known or revealed.
The new risk points to an even bigger problem: In most states, including Indiana, no one knows where coal ash has been dumped because there were no tracking requirements.
The EPA does know hundreds of millions of tons of the hazardous waste is currently sitting in impoundments all across the U.S.
Indiana has more than 80 of those coal ash pits, the most of any state.
But at least 180 million tons of the waste also have been used as structural fill since 1980, according to the American Coal Ash Association, an industry trade group. That amount, if placed in hopper cars, would fill a freight train long enough to circle the earth – and that’s just from the last 44 years. How much more was went into fill before then is not known, but use continues to increase, jumping 40% from 2020 to 2021, according to the ACAA.
The Town of Pines near the shore of Lake Michigan, the area Jensen studied, is among the exceptions where environmental officials and utilities are aware of the problem and can work to address it. Most other areas, however, are left with big question marks.
People may be unknowingly exposed to dangerous levels of radiation from coal ash used in their yards, under their homes, beneath roads and even in public areas including parks, playgrounds and schools. Repeated exposure to excess levels of radiation can cause cancer.
“It’s a big problem and needs thorough investigation and creative ideas,” said Jensen, a certified health physicist at the EPA for 25 years, who lives in northwest Indiana.
EPA reveals new concerns
The new risk was revealed in a draft assessment
published in November as part EPA’s ongoing efforts to strengthen the federal coal ash rule established in 2015.
Previously, heavy metals and contaminants such as arsenic, mercury and chromium have been the major points of concern in coal ash. But this new review also pointed to “direct exposure to gamma radiation.” Even small amounts of the toxic material pose a risk of cancer 35 times higher than previously revealed by the EPA, the assessment concluded.
When coal ash constitutes just 8% of the soil mixture, the added risk is above 1 in 10,000 – meaning an additional one person in 10,000 people, at least, is at risk of developing cancer. The actual risk is likely greater, according to Earthjustice, a nonprofit environmental law organization.
That’s because coal ash is often used in much higher percentages within fill and often is not covered with much soil. It’s regularly used as fill because it’s cheaper than soil, said Lisa Evans, an Earthjustice attorney who specializes in coal ash: “So if you’re trying to save money, why would you mix it with more soil?”
The EPA rule revisions focus on safeguards for fill used on utility properties.
Despite the newly identified risk, the EPA is not proposing more rules for coal ash used outside utility sites. Evans noted the toxic material poses similar risks regardless of where it’s used. “Nothing prevents power plants from moving radioactive waste from their own backyards into the backyards and neighborhoods where American families live,” she said.
Where is the coal ash?
The Town of Pines is an example. Many residents saw contamination in their drinking water wells from coal ash in an unlined landfill in the town more than 20 years ago. As a result, they were provided with bottled water for some time before being hooked up to municipal water.
The water was not the only concern. For years, residents also raised concerns about contamination in the soil. It wasn’t until 2014, a few years after Jensen sent his report to the EPA, that federal officials began testing the soil in Pines, said Cathi Murray, a longtime resident. They found coal ash in people’s yards, under roads and even beneath the playground outside the city hall building.
In many areas, NIPSCO has dug up the coal ash to a depth of a few feet and covered it with soil. But more remains, including beneath an unpaved road that runs along the back of Murray’s property.
Pines is a small town, only about 600 residents – too small to do a health study they were told by the government. But Murray said there is someone with cancer on nearly every block.
“We can’t say for sure what caused it,” said Murray, who herself has lost more than 60% of her thyroid gland. “But it makes you wonder.”
In one North Carolina community, coal ash also was used extensively as fill, including next to the public high school. Structural fill issues have also released coal ash into tributaries of Lake Norman, a popular recreation spot and the drinking water source for the town of Mooresville.
Dozens of teenagers and other residents in the town of have been diagnosed with cancer. One mom whose daughter was diagnosed raised more than $100,000 to fund a health study conducted by Duke University. They found that thyroid cancer rates in the town were as much as three times higher than expected. The connection to coal ash is suspected, but not confirmed.
Experts worry there are numerous other communities where residents may be exposed to increased cancer risk – yet not even be aware.
Where exactly, though, remains unknown because there are few public records, if any, on where coal ash was used outside power plants. Indiana, for example, did not require any tracking. Indra Frank with the Hoosier Environmental Council said utilities might be the only entities that have records.
Indiana’s major utilities, when asked by the Indianapolis Star, said they had no such records.
Medora Lee
What would you and your spouse do with $351,000 when you retire? h That may sound like a nice nest egg, but you may need every penny just to cover health care costs in retirement, including Medicare premiums and drugs after insurance pays its part, according to recent research. h And that figure is conservative, the research notes. h Americans already lack retirement savings. A New York Life survey of 2,202 adults last month showed only 4 in 10 have a nest egg, even though 74% expect to retire at 64. That shortfall means many retirees may find their golden years tarnished by financial stress.
What can be done to help seniors?
Financial advisers and health care experts say some of these moves could help ease the burden for seniors:
h Legislative changes – whether it’s reduced benefits, increased taxes on workers, or some combination of the two – might help shore up Medicare, Spiegel said.
h Early planning, by putting money into a health savings account, modifying your home so you can stay as long as possible and saving money can help prepare seniors for life after the workforce. Also, consider long-term health insurance.
h Instead of signing up for Medicare, seniors can buy Medicare Advantage, also known as Medicare Part C, which is an all-in-one alternative to original Medicare. These plans often have a $0 premium and offer benefits like dental, vision and audio services.
A 65-year-old man with a Medicare Advantage plan would need $99,000 to have a 90% chance of meeting his health care needs; a woman would need $116,000; and a couple $189,000, the benefit research institute report said.
Those are significantly lower savings targets, but “Medicare Advantage plans often have limited networks or may require approval before certain medications or services are covered,” it noted.
Betty Lin-Fisher
How do you talk to your parents about death and finances – without seeming like you are money-hungry? h Last year, Melisa Gotto’s father died. h “We did talk about death and sort of what accounts he had and what his desires were for when he passed, but we didn’t really get into the nitty-gritty of it,” said Gotto.
But Gotto said she and her father, Dave, were unprepared for all that came with tying up everything from funeral arrangements to his financial affairs.
For instance, her dad had a burial plot in California but died in Nevada. She didn’t know it cost $10,000 and required special health department permission to transport a body over state lines.
Gotto’s parents were divorced. Now, Gotto wants to avoid the headaches and heartache she dealt with after her dad’s death. She has begun talking to her 69-year-old mom, Kim Slingluff, about how Slingluff will afford to live the rest of her life – and how the two of them prepare for her mom’s death.
“It is a very uncomfortable conversation when you start talking about a taboo topic,” said Gotto, CEO of Scandal Co-Active, a boutique public relations and marketing agency. “As a society, we don’t really talk about death, but it’s something that we all will experience. I think it’s something we should all start talking about.”
Gotto’s dad had communicated verbally that she’d be the executor of his estate when he died. But he left no other instructions for her and her brother, such as his medical wishes or details of what exactly to do after his death.
“He was pretty organized and had everything in a safe, but I didn’t know where that was,” she said.
Gotto said her dad also didn’t have enough finances to cover his funeral expenses. And seven months after his death, she’s still trying to get the title for his car.
Gotto says she doesn’t want to seem greedy
discussing her mom’s finances or wishes after her death, but she doesn’t want to repeat what happened with her dad.
She has begun telling friends with kids to “do them a huge favor. Get all of this settled before you get older because it’s so important.”
Gotto said she has been approaching the subject with her mom with compassion and empathy. Slingluff has been verbally telling her things, but Gotto knows she needs to get things in writing.
Gotto’s advice to others: Make a list.
“Make a list of everything you want to ask them because you don’t want to have to keep revisiting the conversation,” she said. “Try to have some patience and understanding. And then if they don’t want to have those conversations, you have to respect that, too.”
Talking about death and finances is an uncomfortable conversation and one that clients of certified financial planner Jan G. Valecka are more willing to have than others.
Some clients feel “they have to disclose everything: their bank accounts, how much ... they have, and that’s where I think it becomes uncomfortable and they feel a little bit vulnerable,” said Valecka of Valecka Wealth Management in Dallas.
“If I had to talk to somebody about estate planning, financial planning, legacy (planning), I would start from the benefit of your loved one,” said Valecka. “Who would you want to take care of or help if all of a sudden something happened to you? And it doesn’t have to be dollar signs, it just has to be more of what are your wishes.”
Having that conversation and letting your loved one know where the important documents are can be immensely helpful after a death, she said.
Valecka’s family had its own experience with this subject. Her husband, Bob, knew that he would be the executor of his uncle’s estate. However, his uncle did not want to discuss details of his death or his financial affairs.
Bob Valecka’s uncle, Joseph Valecka, was found dead the day after Christmas in 2022, with his wife, who has dementia, next to him unaware that he had died.
Bob and Jan had to quickly work to gain guardianship of the aunt and tend to the uncle’s estate. But they had no instructions.
They couldn’t find a will or any estate documents. It turned out there had been a will and Power of Attorney and other documents drawn up.
They didn’t find them until after they went to court for emergency guardianship of the aunt.
The unanswered questions ranged from the significant to the mundane. Had he wanted to be buried or cremated? The uncle and aunt had a lake house. But the Valeckas had no key and didn’t know the security code to get into it, or how to turn on the wells or if someone plowed the driveway.
“It was a mystery to us,” she said. “It could have been so much easier with planning and an uncomfortable conversation.”
Gotto’s approach to talking to her mom with compassion is a good one, said Valecka. Approach your loved one with the idea that they are sharing their wishes and helping the people they love after their death, Valecka suggested.
In that conversation, talk about getting a will, health directives and even user names and passwords for digital accounts, she said. Valecka didn’t know she would need a copy of the uncle and aunt’s marriage license to get the aunt on the uncle’s Social Security benefits. Valecka has now added that to her estate documents.