What 19th-century neuroanatomist Sir Charles Bell called the sixth sense is probably one you didn’t know you have.

In 1971, 19-year-old Ian Waterman awoke and discovered his body had disappeared. He could see his physical body, yet he was unable to move or feel it. Immobilized by a rare neurological illness caused by a rare autoimmune response, his immune system attacked the sensory neurons from his neck down. He was unable to feel any sensation below the neck, yet he was not paralyzed in the traditional sense. When his mother tried to help him stand, he collapsed to the floor because he could not control his limbs in gravity. Waterman lost the ability to sense proprioception, or where the body is in space. It is this “sixth sense” that many take for granted, and one that most don’t know they have.

Mind Over Matter

Waterman lost the basic ability to sense himself and the presence of his own body, and he began to feel that he did not exist. The information that Waterman lost is a complex system of neural pathways that subsist throughout the body, specifically in the joints, tendons, and muscles. Standing, balancing, performing coordinated movements, and maneuvering through crowds is all done using proprioception.

Refusing to live life in a wheelchair, Waterman, once a butcher by trade, where intricate movements were part of his skill, began to visualize his movements as though he were performing them. One day while lying on his back, he imagined the physical act of sitting up. He began to do this daily and started to see small movements, even though he still felt nothing. Finally, by using intent for the physical action, he was able to sit up.

Waterman taught himself how to regain his movements again by consciously controlling and visually tracking every action. The visual component was vital, and if the lights went out suddenly, he collapsed to the floor a though he were unplugged. If the lights were restored, he could move again and stand. Dr. Jonathan Cole, who practices at Poole Hospital, England, and Southampton University, was the first physician to recognize what Waterman had begun to do in his self-training protocol. He wrote about it in the book Pride and a Daily Marathon, which tells Waterman’s incredible story. “Before I met Jonathan, I often thought I might be mad,” says Waterman. “No one understood what was wrong or why life was such a struggle.”

The Importance of Proprioception

Waterman’s experience resonated in the medical field, as physicians were fascinated with Waterman’s ability to compensate for his loss. While others with the same condition often refused to learn to walk again, Waterman did not surrender. Yet his case also emphasizes the critical importance of proprioception and touch, according to psychologist Michael Turvey, PhD, who researches touch at the University of Connecticut. “The haptic senses underlie almost everything we do that involves movement,” he says. “At the same time, Waterman is able to do more than many theories of touch and movement would predict.” The case also presents a unique moment to test theories of movement and proprioception that would not be possible otherwise. Never have researchers been able to examine precisely how a complete lack of feedback from the outside world affects a living human.

Physiologists of the 19th century did not know specialized proprioceptors existed. They questioned the origin of ‘muscle sense,’ a term credited to the Scottish physician, scientist and neural system researcher physiologist Charles Bell, who first distinguished motor from sensory nerves. Proprioception in the body is governed by mechanosensory neurons distributed throughout the body, also known as proprioceptors. This wasn’t always known; early physiologists assumed all awareness in body position is central and controlled by the brain only. In the late 19th century, neurophysiologist Charles Sherrington proved that a peripheral source of sensory receptors were located in muscles and tendons, and that the nervous system, including the brain, is a single interlinking network.

Sherrington created the term proprioception, which he defined as the feeling of stimuli that “are traceable to actions of the organism itself.” His sensory theory was based on what he called exteroception, or stimuli existing outside the body, and interception, the sensory signals from the internal organs. While other physiologists like Kuhne and Ruffini had defined proprioceptor organs, Sherrington was the first to apply sensory neuron’s influence on innervating organs and muscles for posture and movement control.

Today, the study of sensorimotor control still centers around Sherrington’s initial model of the proprioceptive system, especially his focus on ‘reflex’ pathways that guide proprioceptive feedback into motor output. How do these receptors help suspend us in gravity? The body has three distinct types of sensors located in the joints, in the connections between muscles, and in the muscle fibers. Without them, after hip surgery for example, a patient would not be able to sense where her feet were in relation to the hip. This would make physical therapy impossible.

How He Got His Body Back

A muscle spindle includes four different nerve endings that spiral around a number of muscle fibers. The small sensor, only a centimeter long, is enveloped in cone-shaped fascia that divides it from the rest of the muscle. The proprioceptors connect the nueron’s varied signals with changes to a muscle. They also remember the position they were in previously when a muscle is motionless. For Waterman, all of these connections were lost. He had to think of movements and have vision to monitor their actions. His case was unique in that he was the first patient to lose his body and teach himself how to walk again. He relied only on the sense of sight and conscious orders to make his legs move.

Waterman has perfected his strategy to an astonishing degree. Since his movements require constant visual contact with the environment and space, he must “plan” his walks. Every movement is choreographed previously, including calculations of the force and direction, and the movements are monitored as he ambulates. He calls his slightly lumbering gait “controlled falling.” While most of his gestures are planned and monitored, research conducted by The University of Chicago’s David McNeill demonstrated some are not. McNeill’s research on Waterman showed the human brain orchestrates communicative motions in the absence of proprioception.

What McNeill discovered through experiments in voice and hand movement is that Waterman uses a thought-language-hand link to modulate some of his hand gestures. His gestures modulated with the speed of his speech. If he spoke slow, his gestures slowed too. Yet the speech-gesture synchrony was exactly preserved. Waterman’s case suggests that control of the hands and the relative motor neurons are possible directly from the thought-linguistic system. While Waterman had reworked his motion and control system, the thought-language-hand link system in the human brain survived his neuronpathy.

Despite his disability, Ian Waterman has taken his life very seriously, always attempting to do the best he can. While he doesn’t care about the science of his illness, he has helped change it with hours of lab experiments. “We choose our own paths,” he says.

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Frontotemporal dementia commonly afflicts people in the prime of their lives and gives them an entire new persona.

Every act of memory is to some degree an act of imagination. – Oliver Sacks

This article is dedicated to my mother, Nancy Wren Cheatham. You are in our sunrises and sunsets.

If you enjoy this article, please donate to the Dementia Society.

On a Cape Cod summer weekend perhaps a decade ago, just like in previous years, the Cartolano family is set to perform their version of a talent show they call The Carto Show. It’s a pleasant seventy-four degrees, and the wind gusts from the water, swaying the juniper and scrub pines as the day fades. From the wooden deck stage, you can hear the seagulls cry and the roar of the surf. They most likely had a family barbecue that day, complete with ice cream and cake and coffee, though it’s difficult to recall now. Nina Cartolano’s mom, Rene, dressed in a nightgown as Lucille Ball, would perform Neal Diamond’s Sweet Caroline, crooning to the dog. It was heartfelt, funny entertainment, and the Cartolano’s treated it as such, said Nina, 32, who uses her comedy upbringing as a writer of sitcoms in New York.

I’ll Crush Your Fingers

For as long as she can remember, Nina’s mother would dress up in costumes and practice lines and even the choreography, just like a Broadway actress. The themes for 2014’s performance were all as varied as past summers, including appearances by her father, Leo, as the Pillsbury Dough Boy in a bathing suit, and the family performing a rewritten Can’t Buy Me Love. Except this year was different, as one person remained aloof from the production, sitting peacefully in a lone chair in the audience. As everyone guffawed, Rene sat emotionless.

Around 2009, Nina’s mother began to change. While she was always known as a smart, witty, and attractive woman, she started overeating and would go into trance-like states. Always the first to laugh at the family’s relentless jokes, now she didn’t respond. A schoolteacher for decades, she began to snarl at kids and say things like, “I’ll break your fingers if you do that again.” It was a line that could have easily been a joke, accept it wasn’t.

Rene began to say other things as though she were someone else. She talked about sex to people she met on the street. Always one to compliment other women on clothes or shoes, now she’d tell them they were fat as they stood right in front of her. She began to eat all the time, and even steal and hide food. She gained twenty pounds. Sarcasm by others went unnoticed, where she used to respond with witty comebacks. It was as though Rene Cartolano had disappeared, and someone else had taken over. And someone had.

A Diagnosis

Confused and often embarrassed by the new Rene, the family spent months researching possible brain afflictions that could be causing her behavior. Finally, they got a diagnosis. While there are many types of dementia, Frontotemporal dementia (FTD) is the most common neurodegenerative disease diagnosed before age sixty. It is centralized in the frontal lobe of the brain, a region that is partially responsible for behavior and emotions. While a disease like Alzheimer’s usually affects older people, and is detected when memory issues begin to arise, FTD literally robs people of their personalities first, and like early onset dementia, it occurs in early ages between 30-50. It’s estimated that 10-15% of people with dementia have this type, but don’t know it.

After decades of new research, neuroscientists now have a better understanding of FTD, and the roles different parts of the brain play in how it shapes our personalities. Yet it remains one of the less known cognitive diseases. Dr. Bruce Miller, one the world's foremost researchers on frontotemporal dementia, is leading the science in FTD research. At his lab at the University of California, San Francisco, he and his team are doing revolutionary studies on the two main forms of FTD. In the speech variant, where speech is affected, patients struggle to find words, often pausing in mid-sentence as the words vacate the thoughts. In the behavioral variant, like Rene Cartolanos, personality, empathy, and judgement are attacked. People might start stealing things or do activities that are dangerous to themselves and others and not realize they are doing anything wrong.

Miller’s work shows regions in the brain that have atrophied from FTD and discovered that the amygdala, orbitofrontal cortex, superior temporal, and fusiform cortex regions show the most tissue damage. Also called the perception network, this region is responsible for responding to social cues, eye contact, facial expression, as well as body gestures. Sarcasm response – something that Rene Cartolano stopped reacting to - relies on all these cues, yet FTD also affects the affiliation and aversion networks, which motivates a person to want to have connections with others and experience rewarding emotions during social interactions. FTD patients also begin to trust strangers and possibly unsafe individuals, often giving out personal information, like bank account numbers.

Bolero As A Score For FTD

“We used to think dementias hit the brain diffusely,” Miller says. “Nothing was anatomically specific. That is wrong. We now realize that when specific, dominant circuits are injured or disintegrate, they may release or disinhibit activity in other areas. In other words, if one part of the brain is compromised, another part can remodel and become stronger.” He reminds us the composer Ravel also suffered from a brain disease with symptoms that were identical to FTD.

Perhaps there is no better musical score to represent FTD than Bolero. Ravel composed Bolero in 1928, when he was fifty-three, when errors in his musical scores and spelling began to present. “Bolero is an exercise in compulsivity, structure and perseveration,” Miller said. It elevates with no key change until the 326th bar. Then it accelerates and implodes in a finale. It changes between two main hypnotic themes, repeating the themes eight times over 340 bars with layers of instruments. Yet the score soars methodically with two simple alternating staccato bass lines.

Miller says Ravel was probably in the early stages of FTD when he was working on Bolero. The disease would have altered circuits in his brain, changing the connections between the anterior and posterior regions, resulting in a deluge of creativity. Because circuits in the brain become reorganized in FTD, some patients develop incredible creative abilities. Miller has witnessed FTD patients suddenly become gifted painters, pianists, or engage in skills they never did before as their disease progressed.

A Loss Of Empathy

In FTD brain scans, a deep blue indicates a loss of tissue, and in some scans, almost the entire frontal lobes are blue. “When we see loss of tissue in that brain region, we know people have lost their interest in life, their drive. They do less, they care less about other people,” says Miller. That loss of empathy, Miller says, can trigger dangerous, impulsive, even illicit behavior. Then there are the stories of fathers left watching their children who suddenly lose the ability to care about them, or CEO’s who start walking around their office with their pants down. To the patient, they are not aware that anything has changed, yet to the spouse, it’s as though a light switch was turned off. Miller says because so many cases of FTD are often misdiagnosed as a mental illness like schizophrenia, it can take years and many brain scans to get a correct diagnosis.

The Soul Of Humanity

Miller often says FTD attacks people at the very soul of their humanity. “This is profound as anything that can happen to a human being. It robs us of our very essence of our humanity, of who we are,” he says. It is a devastating financial burden for families, too, as the cost of caring for someone with FTD is astronomical. The outcome of FTD is always death. As FTD erodes the brain, it begins to cause organs to shut down. Swallowing becomes difficult and eventually impossible. Yet Miller is optimistic, leading the promising research both in his lab and by NIH- funded grants to scientists around the globe. “Suddenly we have interventions and research that are going on that give me great hope,” he says. “I'm hoping in the next five years that we will have very powerful therapies in certain variants of frontotemporal dementia that may stop it cold.”

Patients in memory care often ask to go home. Some believe they are still home, in the place they have always lived. Some ask for their dogs, some for their mothers or fathers or siblings who have long since died. For caregivers to explain constantly throughout a day that this is where they live now is not comforting to the dementia patient. To try and ease this distress, many memory care facilities have installed prop bus stops. When a patient asks to go home, the caregiver walks them to the bus stop, where they sit and wait for a bus that never arrives. Sometimes they wait for hours, sometimes they fall asleep. Eventually, as is the course of dementia, their thoughts fade like sunsets, and they forget what they are doing at the bus stop. They are gently led back to their rooms to prepare for sleep. Perhaps when they dream, they dream of a bus that finally came. When they wake in the morning, the first thing they will say is that they want to go home.


If you enjoyed this article, please consider donating to the Dementia Society.

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Anti-vaxxers are using fear against the COVID-19 vaccine. And it might be working.

And Then I Just Fainted

On Dec. 17, Tiffany Dover, a registered Nurse at CHI Memorial Hospital in Chattanooga, Tennessee, received the first shot of the Pfizer COVID-19 dose while at work. Since healthcare workers were the first to get the vaccine, she was emotional yet excited. She could finally continue to help people and not worry about getting sick. It was a big event, so like the media coverage of politicians receiving the vaccine, local and national cameras were rolling. Seventeen minutes later, during an interview, Dover said she felt dizzy and then fainted. After, she explained to the press: “I have a history of having an overactive vagal response, and so with that if I have pain from anything, a hangnail or if I stub my toe, I just pass out,” she said.

The hospital tried to quell the chaos by quoting the CDC website as saying that “fainting can happen after many types of vaccinations. Fainting can be triggered by many types of medical procedures. In fact, CDC has received reports of people fainting after nearly all vaccines. Fainting after getting a vaccine is most commonly reported after three vaccines given to adolescents: HPV, MCV4, and Tdap.” The press announcement didn’t work.

Anti-Vaxxers Are Watching You

A small, vocal minority known as anti-vaxxers were watching, and Dover’s explanation made them angry. As Jonathan Berman, a doctor at the New York Institute of Technology who studies anti-vaxxer communities said, “But it made for a dramatic video.” Berman said anti-vaxxers are ravenous for proof that the vaccine is dangerous, and they insisted she was lying and in reality, had responded negatively to the vaccine. “People tend to believe their eyes, and seeing someone faint is scary. It gives you a visceral gut reaction,” Berman said. For anti-vaxxers, that’s a powerful tool.

Not unlike its dark history in other diseases, anti-vaxxer rhetoric during the pandemic has led some Americans to deceptively believe that COVID-19 vaccines will kill people, or that the government is using it to control and manipulate our democratic rights. And they are hunting relentlessly for any evidence that helps their cause, even if it means devastating families or healthcare workers with invasive social media tactics. Authorities on anti-vaxxers and conspiracy theorists are concerned that this wild-wild west mentality for death and mayhem could hinder efforts to defeat this horrific pandemic. The problem is, in many ways it already has.

Something Bad Happened To Tiffany Dover

So anti-vaxxers started trolling Dover online, searching her social media accounts for any usable evidence to prove something grim had happened to her. Their argument? How could she be a nurse if she faints after getting a shot? They ranted that because she had not posted anything on social media in the days following her vaccine, something bad had happened to her. Something bad did happen. But to a different Tiffany Dover.

The anti-vaxxers succeeded in finding a death certificate for someone with Dover’s name and age who lived in Higdon, Alabama, only a 28-mile drive from Chattanooga. They then went on a social media rampage, posting the death certificate, insisting that the vaccine had killed her. On bgdsearches.com, the post, with a video of Dover fainting read:

“We regret to report that nurse Tiffany Dover has reportedly passed away, according to the following reports posted on social media and other platforms today December 19, 2020. Reports are that Tiffany Dover, the nurse who fainted on television after receiving the vaccine inoculation, has died. Hard to confirm right now, since we know this would be the pro-vaccine people’s worst PR nightmare and they will want to cover it up. (sic)” And other comments to that post: “They stand in front to block it she is DEAD AND THEY ARE COVERING IT UP FIZER (sic) MUST PAY.” And:

“Update: someone found a video of her from before. She’s a (sic) actress, just like I thought. Look at the comments below, however they deleted the video. Because it’s not real, bad actress. I don’t believe the doctors are real either. Did you see how they acted. Sure didn’t look like someone was in trouble. (sic)”

The Nurse Is Fine And All Is Well

Later, the hospital Tweeted that the nurse was at home and all was well, but that Ms. Dover wanted to maintain her privacy. When that failed to persuade, the hospital said she was working a shift, and even showed a video of her with other employees. A Tennessee public health official stated publicly that they had no records of anyone who received a COVID-19 vaccine that died for any vaccine-related reason.

Dedicated anti-vaxxer conspiracy theorists salivating for proof of their convictions, however, don’t want the power of the media taken away, Berman says. So, instead of retreating on Dover, they announced they refuse to believe she’s alive until she makes a statement with proof of a timestamp and date. They continued to harass her family and posted untruths on social media, prompting Dover to cancel all her accounts. They also implored they still won’t believe anything she says because she has been “paid off” to say she’s alive and well. And the video that the hospital released of Dover happily at work? “It’s a deep fake video or a stunt double. (sic)”

A post on Telegram, analyzing the video, said, “Tiffany Dover’s hair is a different shade and thickness, folded differently on her head, covered mouth, and you can’t see her ice blue eyes.” The post continued: “They pushed the crisis actor to the front [of the group of nurses in the video,] too. This is further proof of the cover up of Tiffany Dover’s death… The vaccinations kill. (sic)”

Vaccine Hesitancy Is Killing Us

The World Health Organization (WHO) recently announced that vaccine hesitancy was one of the top ten threats to global health. Health experts say anywhere from seventy to ninety percent of people need to be vaccinated if COVID-19 is to be controlled. “What it does is it protects those who aren’t vaccinated, so we would like to see seventy-five to eighty-five-percent of the population vaccinated, because right now everybody is susceptible,” said Dr. Laura Cassidy, an epidemiologist at the Medical College of Wisconsin.

In some polls, approximately two-thirds of Americans say they would get a coronavirus vaccine. Statistically, this number could change as the nation understands more about the vaccine’s success and potential side effects. Other polls show only about fifty percent of Americans said they plan to get the vaccine when it becomes available, and there are a variety of reasons that have nothing to do with the anti-vaccination movement. Yet it’s a tough sell to those that have a deep-seated “American” belief that individuals know better than the government. And there are a lot of them out there.

Vaccine hesitancy is a term that really comes from the research habits of new parents introduced to vaccines for the first time, and because they don’t know where to go for answers, they rely on Google to search for information. Unfortunately, these new parents are bombarded with anti-vax messages, especially on apps like Facebook, where an entire cult of untruths exists. In the last few years, Google took measures to curve the number of groups associated with anti-vax sites, and it changed things considerably. Now, with the pandemic and more than one vaccine being offered, the anti-vaxxers have an entire new folly to engage in, and it’s frustrating scientists as they scramble to control COVID-19.

Yet there are others who are vaccine-hesitant, and it’s difficult to determine who they are. We know that White adults are more likely to be vaccinated than Black adults are, and that could be because minorities don’t have good access to healthcare and decades of abuse have corroded their trust in the medical establishment. Anti-vaxxer groups have a history of praying on Black people, as they did nearly a decade ago. When anti-vaxxers in Minnesota invited the disgraced researcher Andrew Wakefield (who inaccurately tied vaccines to autism) to give a talk to the state’s Somali immigrant community, immunization rates among Somalis declined. Just a few years later, that community sustained a large measles outbreak, and many died.

A History Of The Anti-Vax Movement

While the COVID-19 vaccine has spotlighted the anti-vaxx movement, it’s not a community that appeared out of nowhere. The Vaccination Act of 1853 mandated vaccinations for all infants over four months old and raised issues of civil liberties as well as religious concerns. The philosophy of health for many Americans simply did not contain scientific studies or analysis, and this is still part of the issue today.

Toward the end of the 19th century, smallpox outbreaks in the United States gave credence to groups fighting for vaccine campaigns, and a polarizing anti-vaccine sentiment. For mothers, especially, fear (like today’s campaign) persuaded a new mindset, as that early vaccination included scoring the flesh on a child’s arm, then inserting pus from the blister of an individual previously vaccinated.

Fear Is The Greatest Weapon

While fear is the greatest weapon, it seems, for the anti-vax soldiers, others, like Zachary Horne, a psychology professor at Arizona State University, decided to perform a study to see if perhaps scaring anti-vaxxers might just work. In the 2015 study, researchers split 315 participants into three groups.

One group read a story about a child with measles as they gazed at diseased children while listening to warnings about the importance of vaccination. The second group only read statistics demonstrating there is no link between vaccination and autism. The last read about an unrelated topic. The group exposed to the vivid anecdotes and shown graphic pictures were more likely to change their attitude toward vaccines than the other two.

Scholars like Berman and others believe this approach might prove effective with COVID-19 vaccine.

Yet he believes having conversations is better. "They're making a risk evaluation just like we're making a risk evaluation. They're doing it in a less reasonable and healthy way and arriving at the wrong decision. That doesn't mean that we have to call them stupid or act like they're foolish. It means we can have a conversation with them. Hopefully, that's a more productive way to go about it."

For The Greater Good

It’s no secret, especially since the pandemic began, that Americans tend to be more interested in personal security than the collective good. If you asked any pedestrian on the streets of South Korea why they wear masks, they would all answer, “For the greater good.” Not so in America. So, reinforcing mask-wearing and explaining how the virus could hurt your kids, for example, could change mentalities for the better. At least that’s what the medical community is hopeful for. Berman argues that anti-vaccination activism is connected intimately to how people see themselves in society as parents and members of their community. He believes effective pro-vaccination efforts must include these cultural aspects instead of battling social media posts.

Yet other professionals argue that adjusting attitudes is a pointless exercise. There is some research that shows giving people accurate information scares them even more and makes them more hesitant.

In another study, researchers found showing images of sick children (as in the previous study), made parents even more anxious about the vaccine, and negated their intent to vaccinate their children.

When Your Children Are Sick

In the end, perhaps most convincing is when your child is at risk of dying, and when that parent was once part of the anti-vax movement. And maybe, it’s these people researchers should listen to for advice on how to change the COVID-19 resisters. For many anti-vaxxers, the scare of a child’s death shakes them out of whatever they’ve read on social media. In 2015, Kristen O’Meara was one of those parents. When her three girls became infected with rotavirus and began projectile-vomiting and leaking diarrhea as they slept, the young mother was horrified. As her children recovered, she began to research - off social media - and discovered in books that there was a vaccine for rotavirus, and the same books exalted the benefits of vaccinations. In short, she discovered the truth of science and it changed her mind set. Now she is a firm believer in vaccines.

She also realized in her experience that vaccine espousers should empathize that the vaccine-hesitant, like anyone, wants to be listened to, not ridiculed. “It is not crazy to wonder about all these unpronounceable, scary-sounding ingredients that are in vaccines,” O’Meara told The Atlantic.

Science Can Change The Future

As epidemiologists and behavior specialists agree, the challenge remains in convincing the most ardent vaccine deniers in a most difficult time. The real issue is the sparse resources dedicated to shifting the reluctance to getting the vaccine, and doing so on a frenetic time schedule. Aside from the efforts of an amped-up production on the vaccine during this major crisis, there is little educational (and psychological) strategy for the public on understanding the true science evidence. At the same time, countering the enormous community of anti-vaxxers, a community that continues to organize using fear and social media, is daunting.

We must be cognizant that we’re never going to reach everyone who distrusts vaccines. Many of the most vehement anti-vaxxers distribute untruths to encourage the mercurial communities that science, and the government, are evil entities. It’s those individuals that never get the correct information. And it’s this capricious population we need to focus on. With an empathetic bent, and a handful of patience, science can change the future if we let it.


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