Former WBZ sports reporter Alice Cook doesn't let ALS stop her from running the Boston Marathon
'ALS Alice they will call me,' she scribbled matter-of-factly on a notepad for a visitor to her home in Cohasset.
Though the disease has robbed her of her ability to speak, Cook, 69, is intent on again running the 26.2 miles from Hopkinton to Copley Square, but this time so people will know there is hope to be found in the 'dark places' of dealing with ALS, also known as Lou Gehrig's disease, and because she no longer wants to 'stay in a cocoon' with her story.
'I have some significant ups and downs,' she wrote. 'In the beginning, I could go to dark places and cry, thinking about the severity of my diagnosis. I would worry about not being there for my kids and husband.'
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But family and friends, Cook noted, surrounded her with 'love and optimism' that sharpened her focus in the wake of her diagnosis, buoyed her
'Let's put it this way,' she said. 'I never realized how comforting hugs could be.'
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Running 'makes me happy and strong'
Cook has bulbar-onset ALS. A neurodegenerative disease, it primarily affects the region of the brain which controls speech, swallowing, and facial muscles. According the ALS Therapy Development Institute, bulbar-onset is a 'relatively rarer form of the disease,' with some studies finding that nearly 75 percent of ALS patients otherwise are afflicted by the 'limb-onset' ALS that initially attacks legs and/or arms; those patients typically need to use a wheelchair.
Cook has remained able to run and maintain an otherwise active lifestyle because her limbs have remained fully functional, with the disease only recently progressing to the lower part of her right leg. When running now, she wears a lightweight, elongated plastic sleeve which stabilizes the back of her leg, running from just below knee level and then wrapping under her foot for added support.
Cook uses a plastic support that prevents her foot from dropping and the toes from curling down and tucking below the foot.
Erin Clark/Globe Staff
To demonstrate, she held up her right arm, using her fingers to represent her toes. The plastic support, she explained, prevents the foot from dropping and the toes from curling down and tucking below the foot.
'My symptoms were mild and I was confident in my ability to run,' she wrote, reflecting on last April's race. 'Now, training and running feels a lot like all the skating I did for so many years. It feels good to do something that makes me happy and strong.'
Cook, showing her glee by smiling and repeatedly tapping her fist on the kitchen table, recounted how she got lost on the course last season, unsure to this day how it happened. The serpentine mass of T-shirts and shorts zigged one way in Wellesley and she zagged the other, ending up 'somewhere in Newton' with no runners in sight. She had to flag a local cop to point her in the right direction.
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The whole thing, wrote Cook, after tapping that fist again and again on the kitchen table, 'added five miles to my run.'
Her glee said that it made the race even better.
Lengthy diagnosis
There is no good form of ALS. There is no cure, no knowing its rate of progression, what it will steal next from body and mind.
For now, Cook manages her disease with twice-daily injections, usually administered by Patrick Voke, her husband of nearly 40 years, and she also takes a daily whack — 14 pills or more — of oral medications.
It took about nine to 10 months for doctors in 2023 to diagnose Cook's ALS. Early in the year, she inexplicably began slurring her words, leading to multiple doctor visits, endless tests, and mounting anxiety. The slurring worsened; her voice faded.
Early on, recalled her husband, doctors investigated a potential link to brain surgery Cook underwent a decade earlier for a non-malignant tumor.
'They wondered if there was some neurological correlation,' said Voke, a longtime attorney who began dating Cook when he was in law school. 'But they ruled that out.'
More time. More testing. More anxiety. No diagnosis.
'It's something!' Cook scribbled, recalling what she told the stumped medical professionals at the time. 'It's not nothing.'
Cook goes through communication cards at her Cohasset home.
Globe Staff
'And here she is,' Voke mused. 'As you can imagine, she has always been an A-type personality, Triple A, so for her that kind of thing it's, 'Boom, boom, boom. I want to know!' The dragging on, the frustration of not knowing . . . '
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Finally, in December 2023, Doreen Ho, a neurologist at Mass General deciphered it as ALS.
'At least we knew,' Voke said. 'Not that the answer made it better.'
Hearing her voice again
Cook may not be able to speak but, to her delight, her voice is no longer silenced. Thanks to two former WBZ colleagues and the director of ALS augmentative communication at Children's Hospital in Waltham, Cook 'talks' by typing on an iPad connected to a Bluetooth speaker about the size and weight of an egg.
Joe Giza and Jackie Connally, longtime producers at WBZ, rummaged through the station's archives for tapes of Cook's on-air work. They handed the tapes to Dr. John Costello of Children's Hospital, who worked with the software company
Prior to that, Cook noted, the iPad emitted a 'snobbish British woman's voice.'
'It's amazing how they put my voice together,' said Cook, her AI voice clear, sharp, and above all, self-comforting and renewing. 'I really like hearing my voice again. It is a whole new world.'
Typing on an iPad connected to a Bluetooth speaker enables Cook to "talk."
Globe Staff
Costello, who has worked for decades to give scores of ALS patients their voice back, noted the voice re-creation art form keeps evolving. He culled Cook's 'professional voice', and though she is thrilled with it, he wants to do better by his patient, ideally crafting a more casual, conversational, highlighting nuances of expression.
The small Bluetooth speaker, he added, makes a substantial difference in the communicative process, ideally enabling user and listener to share direct eye contact. It's a nuance that often can be lost if the user's voice emits directly from the iPad.
'I think it's such a stripping of humanity when someone is paying attention to your technology and not your face,' Costello said. 'It's the whole social-human connection — people should be looking at you and your eyes, not looking at your device.'
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Olympic aspirations at a young age
Cook grew up East Lansing, Mich., and took to the ice early. Her mom made her skating outfits and bargained for ice time at the local rink. The cute local kid with endless energy had Olympic aspirations. By high school, she was allowed to swap gym class for extra time at the rink.
Cook (second row, fifth from left) with the US figure skating team that competed in Innsbruck, Austria, in 1976.
Courtesy of Alice Cook
She loved to skate, not only for the performance art and athleticism, but for the focus and discipline and endless hours of practice that underpin every budding Olympian's dream.
In 1976, Innsbruck was dominated in singles by Dorothy Hamill — who just may have borrowed that trademark wedge hairstyle, ahem, from a teammate — while Cook skated pairs with partner Bill Fauver, finishing 12th.
Cook and Bill Fauver finished 12th in the pairs competition at the 1976 Winter Olympics in Innsbruck, Austria.
Walt Disney Television Photo Arc/ABC
In the months leading up to Innsbruck, Cook recalled, she and Fauver practiced daily for four hours, typically midnight to 4 a.m. As the Games grew close, their practice time increased by another four-hour session in the afternoon. She said she often thinks of those hours now as she chugs along the Whitney Spur Rail Trail in Cohasset training for the Marathon.
'We must have skated a thousand hours before Innsbruck' she recalled of her time training with Fauver. 'Skate. Head back to our crappy apartment for breakfast, get some sleep, do it all over again. Loved it.'
A 'total pro' on TV
Alan Miller, a former executive sports producer at WBZ who worked with Cook for years, acknowledged the 'cruel irony' in her losing her voice.
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'What made her so great for the job was that she could talk to anyone and get people to talk to her,' Miller said. 'Even more, people wanted to talk to her. And she listened to the answers. I know all that sounds simple, but it's not. She could talk. She could listen. She knew what she was talking about and was great on the air. Total pro.'
Cook's background as an Olympic skater, said Bob Lobel, Channel 4's longtime sports anchor who recruited her to the station, was constantly evident in the commitment and discipline she brought to all facets of her job.
'She just wouldn't be denied, and she was able to connect,' Lobel said. 'She was like Tinker Bell, the mystical fairy to make things happen — almost magical. Apart from her movie star looks, she was just smart and aware. She knew the sports. She knew the athletes and she knew how to relate to them.'
Cook raises the Stanley Cup at a postgame celebration in Denver after Ray Bourque and the Colorado Avalanche won in 2001.
Courtesy of Alice Cook
Lobel recalled the chaos inside the Superdome in New Orleans moments after the Patriots defeated the Rams, 20-17, in Super Bowl XXXVI on Feb. 3, 2002. He was preparing to do a live interview with Bill Belichick and it was Cook who fetched the Patriots coach and delivered him to Lobel's spot on the sideline.
'So she brings him over and says, 'Bob, here he is, talk to him,'' Lobel said. Belichick then turned to Cook, Lobel said, 'and he says, 'Uhhh, no, I'd rather talk to you.' It was, 'To hell with you, Bob, I'm talking to Alice.' I don't blame him. I would have done the same thing.'
The 'definitive crossover' that existed between Cook's skating and broadcast career, Lobel said, were evident in the way she approached every assignment, every challenge.
'And, I guess it's no different,' he added. 'With what she's going through now.'
Back on track
Cook keeps her running calendar within easy reach on the kitchen counter. The bad weather late this winter kept her from logging as many miles as she'd prefer, but she's back on track now, confident she'll have built up sufficient base to carry her up Heartbreak Hill, past her beloved Boston College (Class of 1980) and on to the finish line.
'They say if you can run 10,' she said, shrugging as she penned her words, 'you can run 20.'
She'll have Patrick, their three adult children, Kelly, Brendan, and Mackenzie, and a legion of extended family, friends, and neighbors to cheer her along the route. She also knows she'll have her cherished Hingham-based faith group praying for her. Her faith, she said, has grown ever more important to her the last couple of years.
'They're a group of over 100 people who say the Rosary every morning on Zoom!' she wrote. 'When I hear them say, 'Continued prayers for Alice,' I feel the love in my heart and soul.'
Whatever the challenge, Cook says she's ready to run, be it the famed Boston race on April 21, or the more challenging twists and turns that await down life's road.
'There is no answer to, 'Why me?' or for anyone who gets stuck with this diagnosis,' she wrote. 'There is nothing ALS patients have done to cause their disease. For me, I am trying to find peace by letting go. Rather than hunt for answers, I take solace in the present moment. The 'why' of this is less important to me than the 'now.''
Cook exchanges a high-five after a recent run.
Erin Clark/Globe Staff
Cook is running in support of the charity
, which supports people with ALS and their families.
Kevin Paul Dupont can be reached at
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Christian Herff, a neuroscientist at Maastricht University in the Netherlands who was not involved in the research, said the result went beyond the merely technological and shed light on the mystery of language. 'It's a fantastic advance,' Herff said. Get Starting Point A guide through the most important stories of the morning, delivered Monday through Friday. Enter Email Sign Up The new study is the latest result in a long-running clinical trial, called BrainGate2, that has already seen some remarkable successes. One participant, Casey Harrell, now uses his brain-machine interface to hold conversations with his family and friends. Advertisement In 2023, after ALS had made his voice unintelligible, Harrell agreed to have electrodes implanted in his brain. Surgeons placed four arrays of tiny needles on the left side, in a patch of tissue called the motor cortex. The region becomes active when the brain creates commands for muscles to produce speech. A computer recorded the electrical activity from the implants as Harrell attempted to say different words. Over time, with the help of artificial intelligence, the computer accurately predicted almost 6,000 words, with an accuracy of 97.5 percent. It could then synthesize those words using Harrell's voice, based on recordings made before he developed ALS. Advertisement But successes like this one raised a troubling question: Could a computer accidentally record more than patients wanted to say? Could it eavesdrop on their inner voice? 'We wanted to investigate if there was a risk of the system decoding words that weren't meant to be said aloud,' said Erin Kunz, a neuroscientist at Stanford University and an author of the new study. She and her colleagues also wondered if patients might actually prefer using inner speech. They noticed that Harrell and other participants became fatigued when they tried to speak; could simply imagining a sentence be easier for them and allow the system to work faster? 'If we could decode that, then that could bypass the physical effort,' Kunz said. 'It would be less tiring, so they could use the system for longer.' But it wasn't clear if the researchers could decode inner speech. Scientists don't even agree on what 'inner speech' is. Some researchers have indeed argued that language is essential for thought. But others, pointing to recent studies, maintain that much of our thinking does not involve language at all and that people who hear an inner voice are just perceiving a kind of sporadic commentary in their heads. 'Many people have no idea what you're talking about when you say you have an inner voice,' said Evelina Fedorenko, a cognitive neuroscientist at the Massachusetts Institute of Technology. 'They're like, 'You know, maybe you should go see a doctor if you're hearing words in your head.'' Fedorenko said she has an inner voice, while her husband does not. Advertisement Kunz and her colleagues decided to investigate the mystery for themselves. The scientists gave participants seven different words, including 'kite' and 'day,' then compared the brain signals when participants attempted to say the words and when they only imagined saying them. As it turned out, imagining a word produced a pattern of activity similar to that of trying to say it, but the signal was weaker. The computer did a pretty good job of predicting which of the seven words the participants were thinking. For Harrell, it didn't do much better than a random guess would have, but for another participant, it picked the right word more than 70 percent of the time. The researchers put the computer through more training, this time specifically on inner speech. Its performance improved significantly, including on Harrell. Now, when the participants imagined saying entire sentences, such as 'I don't know how long you've been here,' the computer could accurately decode most or all of the words. Herff, who has done studies on inner speech, was surprised that the experiment succeeded. Before, he would have said that inner speech is fundamentally different from the motor cortex signals that produce actual speech. 'But in this study, they show that, for some people, it really isn't that different,' he said. Kunz emphasized that the computer's current performance involving inner speech would not be good enough to let people hold conversations. 'The results are an initial proof of concept more than anything,' she said. But she is optimistic that decoding inner speech could become the new standard for brain-computer interfaces. In more recent trials, the results of which have yet to be published, she and her colleagues have improved the computer's accuracy and speed. 'We haven't hit the ceiling yet,' she said. Advertisement As for mental privacy, Kunz and her colleagues found some reason for concern: On occasion, the researchers were able to detect words that the participants weren't imagining out loud. Kunz and her colleagues explored ways to prevent the computer from eavesdropping on private thoughts. They came up with two possible solutions. One would be to only decode attempted speech, while blocking inner speech. The new study suggests this strategy could work. Even though the two kinds of thought are similar, they are different enough that a computer can learn to tell them apart. In one trial, the participants mixed sentences in their minds of both attempted and imagined speech. The computer was able to ignore the imagined speech. For people who would prefer to communicate with inner speech, Kunz and her colleagues came up with a second strategy: an inner password to turn the decoding on and off. The password would have to be a long, unusual phrase, they decided, so they chose 'Chitty Chitty Bang Bang,' the name of a 1964 novel by Ian Fleming as well as a 1968 movie starring Dick van Dyke. One of the participants, a 68-year-old woman with ALS, imagined saying 'Chitty Chitty Bang Bang' along with an assortment of other words. The computer eventually learned to recognize the password with 98.75 percent accuracy — and decoded her inner speech only after detecting the password. 'This study represents a step in the right direction, ethically speaking,' said Cohen Marcus Lionel Brown, a bioethicist at the University of Wollongong in Australia. 'If implemented faithfully, it would give patients even greater power to decide what information they share and when.' Advertisement This article originally appeared in
