TIME health

Living With ALS: ‘I Can’t Believe I’m Still Alive’

Patrick O'Brien

The past few weeks I've watched from my bed as the disease that is slowly killing me has turned into an overnight trend

I wake up almost every morning having dreamt of food. I watch Goodfellas just for the food scenes. My kingdom for a Big Mac. Taco Bell commercials are thought-provoking to me. But the fact of the matter is, I can’t eat. Or run or walk or even move my legs or arms. I’m lying flat in a bed and typing this with my pupils, which, along with my brain, are among the last functioning parts of my body.

I was diagnosed with ALS at 30. I’ve been filming every angle of this disease for the last 10 years. In October, I’ll turn 40. Damn, where does the time go? I started shooting a film as a “f-ck you” to ALS. My cinematographer, Ian Dudley, has this old Russian 35mm camera with these amazing lenses. It was important to me that we get it down on film because ALS is a very physical disease. If it was going to steal my being, I would replace it with celluloid.

When I stop to think of the hell I’ve been through, I can’t believe I’m still alive. When I think of all the people out there with no support, my heart floods. Often I break down crying. I’m lucky because I get to live in one of the best ALS communities in the country, the Leonard Florence Center for Living in Massachusetts, the nation’s first ALS residence. Besides the daily love and help of the staff here, two things keep me going: my son, who is 6 and lives far away from me in Florida, and finishing my documentary.

There’s a bright side to ALS. I know that sounds twisted, but in a lot of ways ALS saved my life. Having a fatal disease turns the odometer of the soul back to zero. It reverses any evils done or done to you. It’s the perfect disease. Everyone should experience what it is like to have ALS for a day. And maybe they are with this #ALSicebucketchallenge that has swept the nation. I call them “awareness baptisms.” It’s freaky when the disease that is slowly killing you becomes an overnight trend. By freaky I mean cool. It’s a way for people to connect with something bigger than themselves, to wash themselves in the fear that they might be next.

I live in a bubble. When it comes to ALS, I make it a point to not remember the gory statistics. ALS has not had any significant drug approval in the 70 some years since Lou Gehrig gave his “Luckiest Man On the Face of the Earth” speech. So I lay here, hoping to see my upcoming 40th birthday, praying to the black dot on my ceiling, unable to even masturbate, dreaming of the outside world.

To have ALS these past weeks has been to be a sort of “disease celebrity.” Even if you’ve been doomed with the fatal diagnosis, the #ALSicebucketchallenge got you tons of Facebook tags and notifications. For a minute, everything is awesome here in ALS land.

Yet why do I still feel such an impending sense of dread? (Medical marijuana usually relieves my anxiety, but I haven’t had any in months because you can’t roll a joint with your eyelids.) I think I’m feeling dread because this ice bucket thing is so successful, and I’m scared that it will end. It has to. The collective American attention span dictates it must. This desperately needed attention will fade. Then where will we be?

Thanks to Michele Dupree, Doug Pray and Karen Ingram for their input.

Patrick O’Brien is a filmmaker who was diagnosed with ALS at 30 years old and decided to embark on sharing his life story in his feature-length documentary to be released later this year.

TIME Aging

Women Give Way More Elder Care to Aging Parents Than Men

It’s nearly half a century since men were shocked—shocked!—to learn that women weren’t entirely satisfied with being second-class citizens. Much has changed since that time, in politics, business, sports and other realms, but not necessarily so much at home, where women still do most of the housework and most of the childcare.

And now it turns out that spend far more time caring for their aging parents as well. That’s the dismal conclusion of a research study presented this week at the annual meeting of the American Sociological Association, in San Francisco. If you look at husbands and wives alone, says study author Angelina Grigoryeva, a doctoral student at Princeton University, things look equal. “Each spouse,” she says, “tends to take care of his or her own parents.”

But elder care is more complicated than that, since siblings are also part of the equation. And when you factor them in, the picture becomes very different: her analysis, based on her analysis of the data rich University of Michigan Health and Retirement Study, shows that daughters give an average of 12.3 hours of elder care per month, while sons provide just 5.6. “The results,” she says, “suggest that daughters try to provide as much care as they can, while sons only step in when there’s nobody else to do it.”

It’s not necessarily that men are selfish jerks. “The difference between elder care and housework,” says Grigoryeva, “is that the former is very hands-on, and often requires intimacy, so mothers might tend to prefer to be helped by their daughters rather than their sons.” Since women outlive men, on average, and there are more female than male elders, that could contribute to the skewed statistics.

Grigoryeva also notes another difference between elder care and other forms of domestic chores: “For housework and childcare,” she says, “the gender gap is still there, but it has narrowed over time.” That’s not what she finds with elder care. “This suggests that there may be some cultural inertia involved. People talk a lot the gap in reference to housework and child care, but not so much about caring for the aging.”

For the moment, at least, thanks to her new study, we are.

 

 

TIME neuroscience

Pomegranate Compound Could Delay Alzheimer’s, Study Says

Eat more fruit for better brain health, science suggests

There’s a chemical compound in pomegranate fruits called punicalagin, which researchers at University of Huddersfield, an institution known for food science, believe could help slow the progression of diseases like Alzheimer’s and Parkinson’s by treating inflammation in the brain.

For two years, Dr. Olumayokun Olajide has lead of team of researchers in studying the effects of the compound on rats, and in new research, published in the journal Molecular Nutrition & Food Research, the researchers showed that the compound was able to inhibit some inflammation in the brain. Now, the researchers are looking at how much pomegranate is needed to get adequate amounts of punicalagin. In 100% pomegrante juice products, the researchers estimate there’s about 3.4% punicalagin, and most of it is found in the skin.

The researchers are also teaming with organic chemists to see if it’s possible to create drugs for inflammation that use punicalagin.

The findings show that punicalagin doesn’t stop or prevent neurodegenerative diseases from happening, but by interfering with inflammation, they could slow the progression. A lot of current research is looking at whether it’s possible to diagnose and treat Alzheimer’s symptoms in people before they start to show symptoms of the disease, at which point, some researchers worry, it might be too late.

It’s not the first time that researchers have looked at the benefit of pomegranate, which in other studies has shown to help break down the plaques in the brain that lead to the disease. All of the research is still early, and the majority is conducted in rats or mice and not humans, but it never hurts to add a little more fruit to your diet.

TIME Research

Ice Bucket Challenge ALS Donations Break $50 Million Mark

The organization raised $64 million in all of 2013

+ READ ARTICLE

The Ice Bucket Challenge is the gift that keeps on giving for the ALS Association. The organization raised more than $10 million on Thursday alone, it said, bringing its total haul since July 29 to $53 million. For comparison’s sake, the group raised $2.2 million during the same period last year.

The contributions, which have come from more than 1 million new donors as well as some old donors, are an enormous boon for the ALS Association, whose national office raised only $19 million in all of 2012.

Since the Ice Bucket Challenge went viral in early August, social media outlets have been crowded with videos of people dumping ice on their heads after delivering a short message explaining their support for research and treatment of Lou Gehrig’s Disease. Public figures who have taken the challenge include politicians like George W. Bush and movie stars like Jennifer Garner and Ben Affleck.

The ALS Association is not the only organization to benefit from the viral trend. Opposition to embryonic stem cell research from some Catholics has led to an influx in donations to other charities that support ALS research without using embryonic stem cells. Project ALS, a smaller charity dedicated to ALS research, raised huge sums after Ricky Gervais and Ben Stiller took the Ice Bucket Challenge in its support.

TIME ebola

Nigeria Confirms 2 New Ebola Cases

Nigeria Ebola
Nigerian health officials wait to screen passengers at the arrival hall of Murtala Muhammed International Airport in Lagos, Nigeria on Aug. 4, 2014. Sunday Alamba/AP

The two are the first infected people who didn’t have contact with the ill traveler

Nigeria’s health ministry confirmed Friday two new cases of Ebola in the country, the first people to come down with the disease who didn’t have direct contact with an infected traveler who brought the virus into the country from nearby Liberia.

Nigerian Health Minister Onyebuchi Chukwu said both newly infected people are the spouses of two caregivers who contracted the virus and later died after giving treatment to Patrick Sawyer, the Liberian-American man who flew into the country infected with the virus last month.

Sawyer passed Ebola on to 11 other individuals before he died. The two new infections plus Sawyer bring the total number of Ebola patients in Nigeria during this outbreak to 14, five of whom have died while another five have recovered.

[AP]

TIME Infectious Disease

Nigeria Confirms 2 New Ebola Cases

ABUJA, Nigeria (AP) — Nigerian Health Minister Onyebuchi Chukwu says the country has confirmed two new Ebola cases, the first two to have spread beyond those who had direct contact with the ill traveler from Liberia who brought the disease to Nigeria.

Chukwu said Friday in Abuja, Nigeria’s capital, that the two new cases are spouses of patients who had direct contact with Liberian-American Patrick Sawyer, who flew into the country last month with the virus and infected 11 others before he died. The two are spouses of caregivers who treated Sawyer, both of whom later died.

These two new cases bring the total number of confirmed infections in Nigeria, including the traveler, to 14. Chukwu says five patients have died, five have recovered and four are being treated in Lagos.

TIME Infectious Disease

Liberia’s West Point Slum Reels From the Nightmare of Ebola

Residents of the West Point slum receive food aid during the second day of the government's Ebola quarantine on their neighborhood on August 21, 2014 in Monrovia, Liberia. John Moore—Getty

Food prices skyrocket overnight after the Monrovia slum is quarantined

A few weeks ago, West Point was merely the worst slum in war-racked Liberia. Today, it is both that and the most notorious urban center of the world’s worst Ebola outbreak.

It is also quarantined from the rest of the Liberian capital Monrovia, and its dank alleyways subject to a nightly curfew. Barricades and barbed wire have gone up, and troops posted. Ships started patrolling the waterfront on Wednesday to further restrict the movement of the 70,000 or so residents. Food prices have skyrocketed. On Thursday, hundreds of people lined up for government handouts of rice and water.

“At the moment West Point is stuck at a standstill and is in an anarchy situation,” Moses Browne of aid group Plan International told the Associated Press.

Over 1,400 people have died in the five-month Ebola outbreak, and Liberia is the country that has been worst hit. Almost a thousand people have been confirmed infected, and more than half of them have already died. Rural Lofa County is worst hit part of the country, but when it was found that Ebola had made its way into West Point, authorities became alarmed.

“There’s a higher risk of contagion for any infectious disease in an environment that is so crowded and that lacks running water and proper sanitation,” Kamalini Lokuge, a research fellow at Australian National University’s College of Medicine, Biology and Environment tells TIME.

With only four toilets, that environment would be West Point.

Adds Lokuge: “Ebola is nowhere as contagious as the flu, but you need to spread knowledge about how it is transmitted in order to control it.”

Over the past week, this has proven to be one of the gravest problems in West Point. On Saturday, a health center was looted and Ebola patients sent running, after a rumor spread that infected people were being brought in from other parts of the country. Others refused to believe the disease existed. “There is no Ebola,” some protesters attacking the clinic shouted.

“There is a high level of disbelief in the government in West Point,” Sanj Srikanthan, the International Rescue Committee’s emergency response director in Liberia, tells TIME. “The government has made a concerted effort to reach out to community leaders, youth groups and churches with the message that the only way to contain the disease is to understand it. But some people still believe Ebola is a conspiracy, and those people we need to reach.”

But even in West Point itself, conveying the gravity of the disease is a challenge. “There’s a degree of anger, people are feeling they are being neglected for others,” Srikanthan says. “This makes it harder to convince people of the seriousness of Ebola.”

Clashes erupted between West Point residents and police when the barricades were first raised and the 9 pm to 6 am curfew imposed, and the area is still tense.

On Thursday, senior United Nations officials arrived in Africa to oversee the Ebola response, including Secretary General Ban Ki-Moon’s pointman David Nabarro. Srikanthan, like other aid workers, believe the presence of dignitaries is of utmost importance .

“This is a forgotten corner of the world facing an unprecedented situation,” he said. “This is still a containable outbreak, but local resources are simply overwhelmed. It would be great to see some recognizable faces taking control over certain aspects of the response.”

He also believes that the situation is not entirely hopeless.

“The situation may be catastrophic, but it is one that can be turned around,” he says. “I think the risks have been overhyped, and that even humanitarians are, to an extent, affected by the fears reported by media. Being in Monrovia, you’re not necessarily going to get Ebola, it’s not airborne.”

TIME Infectious Disease

Remember MERS? Scientists Want Treatments to be Ready, Unlike Ebola

MERS is another disease with no cure or vaccine--can scientists get ahead while there's still time?

Do you remember MERS? That’s right, the Middle East Respiratory Syndrome Coronavirus infection (MERS or MERS Co-V). It may seem like a disease of the past now, but there was a time only months ago that we had similar if not equally overreactive fears about whether the disease–which was spreading primarily in the Middle East–could spread through the United States.

In fact, there were a few cases of MERS in the U.S. in May. The CDC told Americans that: “In this interconnected world we live in, we expected MERS Co-V to make it to the United States.” And though the virus is a very different disease from Ebola, it similarly transmits between humans only via direct contact–making health care workers the most at risk. And like Ebola, there is no vaccine or cure.

Right before MERS slipped off our collective radars only to be replaced by the deadly Ebola virus one continent over, the World Health Organization (WHO) reported in July that it had received reports of 837 laboratory-confirmed cases of infection with MERS-CoV including at least 291 related deaths.

So, why is no one talking about MERS right now? Cases and deaths appear to have leveled off for now, which is leading researchers–who are very much still paying attention to the disease–to believe that perhaps it’s seasonal, like the flu. “It appears we are dropping out of MERS season,” says study author Darryl Falzarano, of the National Institute of Allergy and Infectious Diseases (NIAID). “It could be happening again in the spring. It’s possible that MERS could be more chronic, and Ebola is more sporadic.”

In a recent paper, a team of National Institutes of Health (NIH) scientists, including Falzarano, report that they’ve concluded that marmosets are the best animal model for testing potential treatments for MERS. The team has tested its fair share of critters, starting with small rodents like hamsters and ferrets, and eventually landing on another type of money called the rhesus macaques.

The trouble with finding the right animal is that viruses react differently depending on the host, and sometimes the cells won’t accept the virus, making testing useless. Though the rhesus macaques were able to contract MERS, their symptoms only grew to that of a humans’ mild to moderate symptoms, which is not as critical for testing as severe.

Now, the finding–published in the journal PLoS Pathogens– is by no means groundbreaking. But it highlights just how difficult and time consuming it can be to develop a drug or vaccine for an uncommon virus. One of the primary topics of debate during the current Ebola outbreak is whether experimental drugs should be used. The two now-recovered American Ebola patients received an experimental drug called ZMapp, and WHO is in the process of developing guidelines for how such treatments should be used. But the inconvenient truth is that even if a drug for Ebola is available, and most manufacturers only have limited amounts, we really have no idea whether they could work. It might just be too late for this outbreak.

But what about MERS?

“You cannot expect magic bullet types of cures off the bat,” says study author Vincent Munster, chief of the Virus Ecology Unit at NIAID. “The viruses we work with are really niche viruses, so there’s not a lot of interest from pharmaceutical companies. But I think this outbreak could propel some recent developments and vaccines.”

There are currently drugs and vaccines in the pipeline undergoing testing for MERS, and like in the current outbreak, they could be considered for last-ditch efforts. Scientists are not just studying how to develop methods to treat MERS, but they’re also trying to determine how it transmits from what appear to be camels, to people, plus whether or not there’s potential it could become airborne. The hope is that as our world continues to become more and more connected, there will emerge an incentive to develop and produce treatments for deadly diseases that we still don’t fully understand.

Thankfully, it appears we have some time when it comes to MERS–at least until spring.

TIME Opinion

Scooby Doo and the Unfortunate Case of Fat Shaming

The latest Scooby Doo film "curses" Daphne by turning her from a size 2 to an 8

+ READ ARTICLE

Tuesday marked the release of Frankencreepy, Warner Bros.’s latest straight-to-video Scooby Doo feature. But it turns out the real villain in the kid’s flick isn’t the monster. It’s Warner Bros. Here’s why.

The movie begins innocently enough. Velma inherits her uncle’s haunted castle, unleashing a curse on the Mystery Gang that makes them lose what they “hold most dear.” Scooby, for example, loses his snacks. And what fate, pray tell, befalls stylish and slender Daphne? She transforms from a size 2 to… a size 8.

That’s right, it is a “curse” to be a size that’s considerably smaller than the national average, which the U.S. Centers for Disease Control and Prevention (CDC) calculates at 5’4″ and 166 pounds. Cue the tears, screams and shattered cartoon mirrors! Because according to this supposedly feel-good-flick, weight gain is the ultimate horror.

This screengrab from the film shows how “cursed” Daphne is portrayed in the film. Which is still below the average size of an American woman:

Scooby Doo: Frankencreepy

Here’s a self-reported actual size 8, exhibited by the beautiful Mariska Hargitay:

Haley & Jason Binn Host A Memorial Day Party
Mariska Hargitay attends Haley & Jason Binn’s Memorial Day party Johnny Nunez—Getty Images

And here’s Christina Hendricks, another redheaded icon who displays her reported size-14 curves with pride:

Cast member Christina Hendricks poses at the premiere for the seventh season of the television series "Mad Men" in Los Angeles, California April 2, 2014.
Cast member Christina Hendricks poses at the premiere for the seventh season of the television series “Mad Men” in Los Angeles, California April 2, 2014. Mario Anzuoni—Reuters

But back to Daphne:

Scooby Doo: Frankencreepy

We don’t need to call the Mystery Gang to figure out where kids pick up unrealistic body expectations and weight stigma.

“It’s sad to think that my daughter can’t even watch a cartoon about a dog solving mysteries without negative body stereotypes being thrown in her face,” blogger Tom Burns wrote. And for a mere $3.99 on Amazon Prime, you too can subject your elementary-school-age daughter to an early dose of fat shaming

In a statement to the Huffington Post, however, Warner Bros. said that while Daphne does lose “her good looks (mainly her figure and her hair)”— implying that an actual realistic figure isn’t, in fact, an attractive one — the message is one of empowerment since Daphne realizes she was being superficial and Fred still thinks she’s hot.

While Daphne is at first upset by the sudden change, there is a touching moment where Fred points out that he didn’t even notice a change and that she always looks great to him.

At the end, when Velma explains how they figured out the mystery, she points out that the curse actually DIDN’T take away what means the most to each of them: their friendship.

The loss of Daphne’s regular appearance is proven to be a superficial thing, and not what actually matters the most to her.

There’s a good message for your 10-year-old. Not having an almost unattainably perfect figure doesn’t matter “the most.” It just matters a lot.

Jeepers.

(Warner Bros is owned by Time Warner, which spun off TIME parent company Time Inc earlier this year.)

TIME Infectious Disease

How Some People Are Surviving the Deadliest Ebola Outbreak in History

Kent Brantly, who contracted the deadly Ebola virus, stands with wife Amber during a press conference at Emory University Hospital in Atlanta, Aug. 21, 2014.
Dr. Kent Brantly, who contracted the deadly Ebola virus, stands with wife Amber during a press conference at Emory University Hospital in Atlanta on Aug. 21, 2014 Tami Chappell—Reuters

Two Americans who contracted Ebola in Liberia have been declared virus-free

Ebola is a nasty virus, but contracting it isn’t always a death sentence.

The current outbreak is immense — the worst in recorded history — and aid organizations in West Africa are stressing the need for more people on the ground, not to mention additional supplies and space.

But in a rare instance of positive news on Thursday, it was announced that two Americans who became infected in Liberia and were evacuated to an Atlanta hospital for treatment had been discharged and are now virus-free. One of them, Dr. Kent Brantly, appeared healthy while speaking at a press conference.

Ebola’s fatality rate in the current outbreak is slightly over 50% — with 2,473 cases and 1,350 deaths — and previous outbreaks have hovered up to 90%. So it may seem hard to understand how someone can survive the disease, which attacks people’s organs and thins blood vessels. But the physicians at Emory University Hospital, where the American patients were treated, tell TIME that even though Ebola’s death rates are frankly terrifying, it’s key to remember that those are in countries — Guinea, Liberia and Sierra Leone — with comparatively weak health care systems. Multiple patients are kept together in a single space and health care workers have neither enough protective equipment nor resources to provide the supportive care that patients need — like isolation, clean linens and replenished fluids and electrolytes.

Still, some people in the U.S. and elsewhere manage to survive the deadly disease.

There’s no cure or treatment for Ebola, but some drugs are being tested. That includes ZMapp, which Brantly and Nancy Writebol received in Liberia. But, their physicians say since they were the first human patients to get the drug, there’s no way to tell what impact it had.

Experimental drugs aside, what doctors can provide Ebola patients is supportive care, like monitoring their heart rate, blood pressure and breathing, as well as replenishing fluids, which can help keep the body as stable as possible so it can fight the virus. (A lack of protective equipment and high demand make this type of care difficult in some of the hardest-hit areas of the outbreak.)

When a person is infected with a virus, their immune system starts to create antibodies to attack it. If the person is strong enough and their body sustains that strength long enough, their immune system can eventually neutralize and clear the virus on its own. Ebola can be detected through blood tests, the results of which only take a day or two to get back. The doctors at Emory said they were able to determine through both blood- and urine-diagnostic tests — and with the help of the Centers for Disease Control and Prevention — that the virus was no longer in the patients’ systems and that they were both symptomless for at least two or three days.

Now there are questions about whether they are carriers, or if they could relapse, or whether they are still infectious. The doctors have confidently said no to all those questions. “The general experience is that once they have survived — especially this far into the disease — they are not contagious, they don’t relapse and they don’t spread the virus to anyone else,” Dr. Bruce Ribner of Emory University Hospital said in the press conference. “We have no evidence of a carrier state for this disease … We anticipate [they will have] immunity to this virus.”

Thanks largely to the quality of care they received, Brantly and Writebol are alive, giving hope that the virus can be conquered in patients with pointed care. But that type of assistance isn’t always available in the areas where Ebola is spreading fastest. “Please, do not stop praying for the people of Liberia and West Africa,” Brantly said on Thursday, in a plea for the public not to forget those who won’t have a recovery similar to his.

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