UNMASKING A DISEASE

Medical professionals team up for Albany-based study they hope will light the way to earlier diagnosis of scleroderma By Stephen Leon ...

Thursday, July 5, 2018

THE HIDDEN DANGERS OF HEAT WAVES


By Patricia Fennell and Stephen Leon

When a summer heat wave settles over us like an oppressive shroud, we know what we can expect from the headlines. There will be warnings to stay inside in air conditioning, stay hydrated, and keep physical exertion to a minimum. There will be reports of hospitals taking in victims of heat stroke and heat exhaustion, and worse, grim stories of heat-related deaths.

We can also expect a spike in certain types of crimes, regardless of whether they make the headlines. Statistically, we know that some categories of crime do not fluctuate with the air temperature—but we also know that extreme heat does correlate with spikes in physical assault in general, and domestic violence in particular.

Anecdotally, we also know to expect increased incidents of road rage, and more arguments and fights on the street, in bars, and in the kitchens and back bedrooms across from your own rear window. Oh, and we’re sure to see a sampling of Ten Ways to Beat the Heat stories, some of which may be more useful than others, although these lists sometimes carry roughly the same depth and gravity as household redecorating tips.

Beyond the headlines, heat waves affect all of us in ways that are both obvious and unseen—and potentially dangerous. And if extreme heat poses health risks to relatively healthy people, those risks are much more pronounced among the most vulnerable populations: the old, the young, and the chronically ill.

We’re all familiar with the term “seasonal affective disorder,” which refers primarily to symptoms that appear with the onset of winter, including depression, low energy, appetite loss, inadequate sleep, loss of interest in usually enjoyable activities, and so forth. While the causes of SAD are not full understood, it is generally thought that the reduction in daily sunlight—and with it, the disruption of the internal body clock, and changes in the levels of brain chemicals—is a significant factor.

Some people, however, are more prone to “reverse seasonal affective disorder,” which switches the timing of the symptoms to the onset of summer. And people who don’t do so well with the heat and long days are going to be that much more affected by a heat wave. So are the vulnerable groups generally, especially the chronically ill, who make up over half the population—and are among the most susceptible to the risks of extreme heat, which can both exacerbate their symptoms and even worsen the underlying conditions.

It’s the Inflammation

Although extreme heat can harm us mentally and physically in a number of ways, the biggest culprit is inflammation, which can present in many different forms and affect everything from cognition to digestion to balance to your ability to get a good night’s sleep. And inflammation can cause pain wherever in the body it occurs.

How can we manage inflammation during a heat wave?

• Stay hydrated—and limit things that dehydrate you, like caffeine and alcohol.

• Exercise moderation, and employ sensible practices with sleep, food, hygiene, etc.

• Try not to have big stress-inducing conversations. This isn’t the best time to pick an unnecessary fight with your spouse or make a life-changing decision like moving or changing jobs.

• Consider looking at an anti-inflammatory diet. Google it and read up. An anti-inflammatory diet can help anybody—it doesn’t matter who you are or whether you have chronic illness.

• Stick to your structures and routines. Prepare ahead of time: gas up the car, make sure you have your basic provisions, get enough cash out of the ATM. Whatever you do for a snowstorm, do for a heat wave.

• Stay cool. This is why God made air conditioning. But don’t go to extremes--find the right temperature setting for your body. Set to the highest temperature that still keeps you cool. Draw the blinds.

Vulnerability Times Seven

Extreme heat, and the inflammation it causes, also affects us in more specific ways that relate to seven “functional capacities”* we all share: fatigue, pain, sleep, cognition, ambulation, mood, and gut. These capacities are negatively affected by a heat wave, and that goes for everyone—but especially the young, the old, and the chronically ill.

• Fatigue may have little or nothing to do with the amount of sleep you get. You can have physical, mental, or emotional fatigue regardless of your sleep patterns—and inflammation affects fatigue too.

• Inflammation can bring on pain anywhere in your body. And when the barometric pressure changes, that creates swelling—in the joints, in the gut, and elsewhere.

• Heat waves disturb normal sleep patterns. The extra light in summer already affects circadian rhythms, and heat waves occur during the maximum light periods. Heat, humidity, and the inflammation they cause exacerbate the disruption.

• As for cognition, there is some science to back up the popular understanding that people don’t think as well in the heat. People have more trouble finding words, focusing, what we might call “staying on point.” And it affects the short-term memory. You can’t find the car. People also are more prone to make careless (and potentially deadly) mistakes while driving.

• Ambulation is affected by many things, notably, the inner ear. As we age, balance becomes more of an issue. Heat and inflammation can throw off balance, which affects walking and other types of movement, including going up and down stairs.

• Heat waves affect mood. In extreme heat and humidity, all of these functions can act upon each other negatively. And regardless of or in addition to these factors, the brain experiences inflammation on its own. All of this makes us irritable. We’re hot and uncomfortable, and we’re not thinking well.

• The gut is already having an inflammatory response, and the heat makes us want to eat less. We change our diet, not necessarily for the better, and we move and exercise less—all of which is a recipe for digestion problems.

Make It Easy on Yourself

You can manage your functional capacities during a heat wave without overwhelming yourself. Think about which capacities typically are your problem areas. Rank them, and work on one or two at a time. For example:

Sleep: Try to create a reasonable sleep schedule. Give yourself time to rest. Keep your room dark. Avoid overhead lighting. Give your brain the message that it’s time to wind down.

Cognition: Avoid mental activities that strain your brain. Minimize distractions so your brain can do the work it has to and then rest. Work for 40 minutes and then take a break. Calm your neurology.

Mood: Manage your mood by expecting the things that are likely to happen, so they won’t throttle you. Expect people to cut your off in traffic. Expect people to be cranky. Expect that you will be more emotional. If you’re vulnerable (and aren’t we all) to feeling low or anxious or unsettled, expect it and be ready to manage it.

*Fennell, P.A. (2012). The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Third Edition. Albany, NY: Albany Health Management Publishing.

Copyright 2018, Patricia Fennell and Stephen Leon

Saturday, May 12, 2018

CONFRONTING THE SILENCE


Albany activist Shirey Archie wants more Americans — especially those in the “silent middle” — to stand against racism by acknowledging the pain of our national history

By Stephen Leon

“I have a 13-year-old son,” says Shirey Archie. “I have a black male child in a society that doesn’t do well with black male children. And when he was born, I realized I had inherited a big responsibility.”

I ask Archie (that’s his last name, and the name most commonly used by his friends and co-workers) if he has given his son “the talk.” He smiles knowingly, but instead of answering directly, he tells me a story, leaning in a little, his eyes fixed directly on mine across the top of my laptop screen.

“I came home one night,” he says, and his son was waiting for him. “He said, ‘Dada?’ I didn’t answer. He said, ‘Dada?’ I didn’t answer. “He said, ‘Dada, is that you?’ ”

“I said, ‘No, it’s not me,’ and I said it again, and then he said, ‘Why is it not you?’

“And I said, ‘Because I had an encounter with the police, and I’m not here.’ ”

Archie had gone out to buy Chinese food, and when he got back into the car, he forgot to turn on his lights before pulling away. He realized it and switched them on, but now a squad car was flashing its lights behind him.

The officer asked if he had forgotten to turn on his lights, and Archie politely explained that he had. Nothing came of the encounter.

“But here’s the thing,” he says. “It could have gone any number of ways. Depending on him, depending on me. And for a lot of people, it’s gone badly.”

To drive home his point, he tells a variation on the original story, like a filmmaker retracing the action but altering details to show a different outcome.

“Scene two: ‘Dada, is that you?’ ‘No, It’s Mama.’ ”

“Where’s Dada?”

“He had an encounter with the police.”

***





Shirey Archie is an eligibility examiner for the Albany County Department of Social Services, but he’s not interested in talking to me about his day job, and nudges me to move on by answering my question with a single word: “paperwork.”

We are here today, at a coffee shop in Albany, to talk about the other work he does, work he does not get paid for, work he believes in but whose effectiveness he has no way to measure.

“I have a sign in my car that says, ‘Stand Against Racism.’ ”

Archie stands and holds up the sign on street corners; lately he’s been standing once a week at the corner of Watervliet and Central avenues in Albany. For the people who ask to stand with him, he designated one day a month for them to join him.

The responses from passing drivers, he says, “range from horn blowing [widely understood to signal approval] to yelling the ‘N’ word, or ‘Get a job.’ ”

“The most significant to me is neither of those,” Archie says, “It’s the silence. I’m of the opinion that people like me in the liberal population think there are more people on our side than there really are.”

“If somebody goes by and honks,” he continues, “you have a general idea what they think. If somebody yells ‘Get a job,’ you have a general idea what they think. But if they’re silent, I have no idea.”

And it’s “the silence in the middle” that bothers and confounds Archie the most.


***


As his son comes of age during a time of palpable racial tension, Archie — who was born near Bill Clinton’s hometown of Hope, Ark., and raised in Niagara Falls, NY — reflects on how much has changed in his own lifetime, and concludes, not much.

He compares the lynchings of yesteryear, in which white supremacists in white robes and hoods killed innocent black men with no consequence, to the police shootings of today, in which men in blue uniforms kill innocent black men with no consequence.

“Race is the problem,” he says. “And my question is, how do good people allow this to happen? How can you sign on to your church creed and allow this to happen?”

Pressed to clarify what he means by “allow this to happen,” Archie says he is referring both to the election of Donald Trump — which emboldened white supremacists to voice their racism more aggressively — and more broadly, to a society that just can’t seem to make the issue a priority.

“Someone gets shot,” he says. “There’s a huge protest about it. Thousands of people show up in thousands of places. A week later, you can’t find two. Why? Because there’s no commitment to it.”

“For me, it’s not an issue. I live it every day.”

But he needs support, he says. He needs the support of the silent middle. He needs more people to do the mental work it takes to really understand what’s going on and do something about it.





“People don’t sit down and take a hard look at themselves,” Archie laments. “If they do, and they come out the other side, they’re committed. If they do the hard mental work and decide it’s not for them, fine. But it’s the people in the middle. The silent ones. I need an answer.”

We talk about various things people do to make themselves feel better: attend a protest, post about the issues on Facebook.

And of course, just feeling better isn’t enough. “You gotta feel bad before you feel better,” he says. “Come feel bad with me for a little while!”

He laughs at the way that sounds. Then his face turns serious again.

“The truth is, if you can’t look at our history, and really feel the pain of it, then you can’t come out of that with the energy you need to deal with it in the present.”

“It’s not an intellectual exercise. It’s not a dissertation. It’s not term paper.”


***


Archie does another kind of volunteer work, although he doesn’t consider it work so much as a responsibility to pay it forward. Having gone through his own dark times earlier in his life, he now helps people who have experienced similar troubles.

“I’ve been in recovery for 35 years, in 12-step programs,” he says. “After all this time, it’s simply a part of who I am. I don’t think I specifically make an effort to help.”

Archie describes “a period of time when I when I behaved badly, toward myself and others. This was primarily due to drinking and other forms of substance abuse. With a lot of help, I stopped the active abuse. With a lot more help, I am working on the changes necessary to stay sane and ‘sober.’ For me, not using has revealed how damaged I was before I ever drank. A lot of people relate to that.”

Archie’s claim that he doesn’t consciously try to help others comes across as characteristically modest understatement.

“I go to meetings. I share my life experience with people I meet when they ask.”

“I’m pretty straightforward,” he says. “People can be naive about the power of substances and how it changes folks’ behavior. And I simply try to clarify, as an end user. But not as an expert — just based on my experience, and willing to share without much reservation. Some people would rather not, but [if] you ask me a question, you’ll probably get an answer.”

“Being sober for me pushes that central responsibility. I could easily say to someone, ‘Take care of yourself, kid.’ But I couldn’t do that and consider myself a sober person at the same time.”


***


For Shirey Archie, a black man raising a black male child, a lot of thought goes into how to respond to words and situations that might be provocative, or hurtful, or hostile — and how to convey those lessons to his son.

He describes how he would take him to the Bethlehem Public Library, and how there was a young white girl who became his friend and played Minecraft with him. “And so I had to say to him that it would be possible that some group of boys might say something inappropriate to him, and that he had to know beforehand how he was going to respond, so [nobody would] get hurt.”

Thinking about this, Archie recalls another moment that took place in Delmar, at a peace vigil. The people taking part in the vigil, as well as the passersby, were mostly white. Archie was holding a sign that said, “War is not the answer.” A couple walking down the sidewalk approached him, and the man said, “What about the Civil War?”

Archie’s response was, “No war’s a good war.”

But he went home and thought about the other things he could have said.

“Part of the challenge,” he says, “when someone says something to me, I need to be careful how I respond. I need to be a little bit better than the comment.”

He talks about the hostile comments his son might hear, the tense situations he might face, the encounters with the police that might turn confrontational. Then he asks rhetorically, “Is that fair?”

Of course not. But it’s real.

“So what are we going to do about it?”

Archie raises his hands to the level of his head. “Nothing changes if we don’t put it up here.”

Then he lowers his hands until they’re out of sight — like the silent middle.

“But we keep it down here.”


***

Copyright 2018 Stephen Leon

Saturday, April 14, 2018

LANGUAGES SPOKEN HERE: ENGLISH, SIGN, CHESS & COMPASSION

In poor Ugandan villages, Ann Fantauzzi and the Giving Circle help build schools, clinics, and hope

By Stephen Leon

Ann Fantauzzi and her group of volunteers with the Giving Circle had just finished an “activity day” in a Ugandan village, working with local children. The day went smoothly enough, but as the bus was about to take the visiting workers back to their hotel some miles away, Fantauzzi experienced the emotionally wrenching side of working in one of Africa’s poorest regions.

“We all got on our bus to go back to our hotel,” Fantauzzi recalls. “The bus had to back down the road to turn around and drive out.”

The bus came to a sudden halt, and Fantauzzi wasn’t sure why. “And I’m sitting in the back of the bus, and looking out the window, and a father was walking down the road cradling something in his arms. And as he got closer, I could tell it was a child, and the child was dead, wrapped up. There was a procession of eight or nine people behind him. I said to somebody, ‘That’s a dead child.’ It just hit me. I’m a new grandmother, and I couldn’t fathom it.”

In a Ugandan village where food and water are scarce and mere survival is a daily challenge, babies and children die with a regularity that people from affluent countries can scarcely imagine. For volunteers experiencing life in this part of the world for the first time, the reality is jarring.

“Why do we choose to put ourselves in emotional and physical harm’s way to serve others?” asks Patricia Fennell, a consultant for the Giving Circle who also has served as director of volunteers for St. Peter’s Hospice in Albany. “Nobody does this work unless they have to. Because when you choose to do this, you will be changed. It’s going to change you. And change can be painful.”

***

The record-breaking 2005 hurricane season included three of the top 10 most intense Atlantic hurricanes ever recorded: Katrina, Rita, and Wilma. The destruction caused by these storms in Louisiana, Texas, Florida, and the Yucatan Peninsula inspired Mark and Kelly Bertrand to create the Giving Circle and help with hurricane relief efforts. Based in Saratoga Springs, New York, the nonprofit, all-volunteer organization prides itself on having no political or religious affiliation, focusing solely on service. Its stated mission: “To seek out communities in need and connect them with those with the resources to help.”

The volunteers pay their own expenses. The Giving Circle pays for insurance and bookkeeping; the rest of the money raised goes directly into programs.

The group works locally, helping underserved residents of Saratoga Springs with services such as Code Blue, an emergency homeless shelter; nationally, sending volunteer relief teams to areas hard hit by hurricanes and other deadly storms; and internationally, building schools, health and birthing clinics, and orphanages, and working on projects as varied as farming and teaching children to play chess, in Uganda and Afghanistan.

Coincidentally, Fantauzzi, who had then just retired from 34 years teaching in the Saratoga public school system, also traveled to Florida in November 2005 to help with relief efforts after Hurricane Wilma. She was not yet connected to the Giving Circle, but she had begun a journey in volunteerism that would soon take her to Africa, and eventually, to a chance meeting in Saratoga with Giving Circle founder Mark Bertrand. 


***

Ann Fantauzzi was born and raised in the Syracuse area, graduated from the State University of New York at Cortland, and did graduate work at Syracuse University and the University of Connecticut before receiving a master’s in educational administration from SUNY Plattsburgh. She taught third grade for one year in Cazenovia, New York, before moving to Saratoga and teaching in the local schools.

In the early ’90s, Fantauzzi joined the Glens Falls chapter of Habitat for Humanity and helped rehab five houses in the area. She continued to be driven toward volunteerism and helping others, among other things, arranging school trips to Russia and other foreign countries. She credits her husband, Damian Fantauzzi, with always being supportive of her volunteer work. “I am very lucky,” she says, noting that not all spouses are so patient. “When he sent me off to Cuba, he thought he’d never see me again.”

Some years later, Fantauzzi began sponsoring a young girl in Uganda so that her parents could send her to school.

In November 2005, after doing hurricane relief in Florida, she flew out to Washington State to be with her brother, Doug Lamoreaux, who was dying of cancer. He was a professor of education at Pacific Lutheran College, and Fantauzzi had become good friends with his colleagues. Lamoreaux had done student exchange programs in Norway, and one of his colleagues did one in Namibia.

After Doug passed away on New Year’s Eve, 2005, Ann was invited to join a group traveling to the sparsely populated country in southwest Africa. She went back to Namibia two more times, helping student teachers get their programs up and running.

In 2010, Fantauzzi and Patricia Fennell wrote three papers on chronic illness in children, with plans to present them at a conference in Namibia. Fennell couldn’t make the trip, but Fantauzzi delivered the papers at the conference.

She could have flown home, but she had an urge to meet the girl she was sponsoring, whose name (last name first) is Gonzo Tracey. Fantauzzi flew to Uganda instead, and stayed at the AOET (AIDS Orphans Education Trust) house. Her driver took her 20 minutes from there to where Tracy lived, where most of the houses were made of mud and cow dung. Her mother, father, and five children lived in a one-room house with a dirt floor. Her father had been disabled in a truck accident and could not work.

“That was the first time I really realized what education meant to these kids,” Fantauzzi says. “They had nothing. They were so grateful that her daughter was going to school. Her mother got down on her knees, kissed my hands, and said, ‘Thank you, thank you, thank you.’ 

And I said, “We’ll get her through high school.”

Fantauzzi made one more trip to Uganda with AOET the next year, and when she came home, she made a presentation about her trip in Saratoga. Mark Bertrand was there. After doing her talk and showing pictures, “I sat down, and Mark leaned over very quietly and said to me, ‘I want you to come to Uganda with the Giving Circle and do an education project.’” 

***

“My mother and father were very much volunteer people,” says Ann Fantauzzi. “My brother and I were both adopted. They gave us a good life and an education.”

Still, like so many adopted children, she became driven to uncover her roots.

“Much of my adult life I have been trying to find my birth mother,” Fantauzzi says, and she did find her ten years ago. Her own experiences have fueled a more general concern for adopted and abandoned children. “I’ve seen so many orphans in Uganda, and I feel for them.” 


Uganda was one of the countries hardest hit by the AIDS epidemic, leaving behind countless orphans. Many are absorbed into other families, but the numbers are daunting. One of the Giving Circle’s projects there was building an orphanage.

The Giving Circle also received funding from Soroptimist (a global volunteer organization dedicated to improving the lives of women and girls), which they used to build a birthing clinic, staffed with a midwife, in the village of Kagoma Gate near the town of Jinja, the two places where the organization does its Uganda work.

Fantauzzi also talks of the unusually high number of deaf children, which she attributes to malaria and the treatment for malaria. In Uganda, she discovered, many deaf children are referred to as “idiots” and are abandoned by their parents. The Giving Circle coordinated services for deaf children, as well as training for sign teachers.

Now, she says, Jinja has a bilingual school: “English and sign.”

Deaf children who were brought to the school were scared when they arrived, she says, because they had never had been treated like human beings before. Now, the kids all play together.

In 2011, when the Giving Circle was working in Jinja, Bertrand was invited to visit “the forgotten people of Kagoma Gate,” Uganda’s poorest village.

“Mark went in there in 2011,” Fantauzzi says. “He said it was one of the worst places he had ever seen. He said there was no clean water, no sanitation. Lots of babies died.”

And the village had no school. “The government said they’d supply the teachers if we built a school. We built a brick-and-mortar school with online donations of $5 bricks. The school had three rooms for primary 1, 2 and 3. We helped them paint it, but [local workers] built it.”

Overseen by the Giving Circle’s Uganda team leader, Moses Wambi, and engineer/designer Emmanuel Walubi (“Emma”), the Ugandan team built the school and all the desks, all supported by donations. Everything was ready — except they had underestimated the number of children who would walk in, not only from Kagoma Gate, but also from nearby villages. “There were more than a hundred,” recalls Fantauzzi.

“Mark said, ‘I want to build more buildings.’ So we built four more classrooms. Now they have primary 1 to primary 7, and also kitchens to feed them.” The Giving Circle also equipped the school in Jinja with a kitchen; children who come to the schools get two meals a day.

Both schools teach kids in grades 1 through 7; the Jinja school is integrated with deaf and disabled children.

“My dream is to have libraries in both schools,” Fantauzzi says. “We’re teaching kids to read, but they don’t have anything to read.”

With the Giving Circle, it’s not hard to imagine this happening.

Fantauzzi mentions a disabled boy whose grandmother was carrying him around on her back. “We got him into school, we got him a wheelchair for school, and we got him one for home,” she says.

“These are the things that really make this such a good thing to be doing.”

***

And somehow, the Giving Circle’s work helping improve the lives of people in Jinja and Kagoma Gate led Fantauzzi to the game of chess.

“I read a book called The Queen of Katwe,” Fantauzzi recalls. “Katwe is probably the most impoverished area in Kampala [Uganda’s capital]. “I was so inspired by it. … It was about this man [Robert Katende] who was a national soccer player, and a math teacher, and a chess player … [and] he believed that chess was such a worldly opportunity for kids.”

Katende believed that playing chess taught a variety of useful life skills, and he started running a chess drop-in program in Kampala as part of his Christian missionary work. At the sanctuary where he taught chess, Katende would have food for the children, which proved to be a big draw.

“So this little girl, Phiona [Mutesi], was selling corn on the street,” Fantauzzi says of the book’s heroine. “And she heard about [the drop-in], and she followed her brother there, and found out they were giving food. And she was hungry. … Robert had her come in, and he introduced her to the game.

“It turned out she was a prodigy. She picked it up very quickly, and she was beating the boys.” 


Katende realized Phiona was a gifted player, especially when she started beating him. He took her outside the slums to complete against privileged players from boarding schools and universities. In 2007, at about age 11, she won the Uganda women's junior championship, and took the title the following two years until the Uganda Chess Federation ran out of money to stage the event.

Crucial to success in chess is the ability to see many moves ahead, and Phiona is said to be able to see as far ahead as eight moves. She is particularly fond of “queening” — when a pawn survives all the way to the other side of the board and becomes a queen — and draws parallels to her own life.

Katende continued to coach Phiona, and took her to her first major international competition, in Siberia, where she got the attention of journalist Tim Crothers, who wrote a piece on her for ESPN. Crothers published The Queen of Katwe in 2012, which was adapted for a Disney movie released in 2016.

Phiona Mutesi eventually won a scholarship to attend Northwest University in Kirkland, Washington.

Sensing an opportunity for the children of Jinja and Kagoma Gate, Fantauzzi e-mailed Crothers and told her about the Giving Circle’s work, and that she loved what Robert was doing, and that she’s like to do something like that.

“So, my email to Tim was forwarded to Robert in Uganda,” she says. “And Robert contacted me within 48 hours. And he said, ‘Chess would be so good for them, I’ll help you out in any way I can.’”

Fantauzzi learned that Katende was at a conference in New York City, and hopped on a Metro North train in Poughkeepsie in the wee hours on the morning Katende was to depart for home, so she could have a breakfast meeting with him. “He said, ‘Let’s Do something.’”

Fantauzzi secured a stipend and gas money for Katende to drive from Kampala to Jinja and run a program. “We had wonderful results,” she says. “Academically, we thought there was an impact.”

Katende took them to tournaments. At one in Kampala, they all got to meet Russian grandmaster Garry Kasparov. They stayed overnight in the capital. The kids had never been out of the village, never been in a car, never seen stairs, never seen flushing toilets, Fantauzzi says.

“They flushed the toilets all night long.”

And Kagoma Gate now has its first champion, a girl about 13 years old, a top student who went to the Ugandan national championship tournament and won a gold medal. The girl, whose name is Lucky, also won a scholarship dedicated by Fantauzzi.

“She said, ‘I want to be like Phiona.’”

I tell the kids: “Chess is a global language. You can go to any country and find chess players.”

***

“Uganda is not someplace you go for a vacation,” Fantauzzi says.

And when it’s time to come home, reentry can be difficult.

Patricia Fennell: “Volunteering in the Third World is like hospice work, is like [a tour of duty in the armed forces]. You are a band of brothers and sisters doing this work. … A veteran coming home is not unlike a volunteer returning from the Third World.”

Some people come home, Fennell says, “and they’re traumatized by what they went through. … They have trouble eating. They have trouble going out and shopping.”

“You come back from spending two weeks with families and children who don’t have close to what you have,” Fantauzzi adds. “One of the things I’ve heard people say is it’s hard to go into a grocery store and see so much food.”

“I have a greater sensitivity now to wasting water and wasting food,” she continues. “The kids [in the Ugandan villages] have to get the firewood and the water. In our village, kids will walk miles, hours to get a jerrycan full of water and struggle to carry it back. And that’s their water for the day.”

For dedicated volunteers like Fantauzzi, there’s no question that it’s worth it. “It’s a good feeling to know that work that I personally have done for them has gotten them an education,” she says. And the girl who won her scholarship, Lucky, “is not going to get sold.”

And thanks to the clinics the Giving Circle has built and staffed, Fantauzzi says, “In the last year, we have not lost any babies.”

***

Copyright 2018 Stephen Leon

This story also appears on the blog at albanyhealthmanagement.com, the website of Albany Health Management Associates, Patricia Fennell, president.

Saturday, March 24, 2018

DAVID H. DRAKE: FEELING IT

Capital Region artist David Drake doesn’t start with a plan, but goes wherever his pencil and brush strokes take him


One of David H. Drake’s Facebook friends, commenting on a painting of his, posted: “What feeling did you want to evoke in this?? I see frenzy and chaos.”

Good luck trying to get Drake to offer specific motivations and intentions for his artwork.

“It really isn’t an issue of intention,” he replied on the thread. “It is not about intending . . . It’s more about what is there and what I can do with it.”

He might have just left it at that, and probably wishes he had.

David H. Drake
“It started out as a sort of exercise in improvisation that evolved into something very landscape-ish . . . at least to my sense,” wrote Drake, a resident of Catskill, New York, who has an upcoming show in Hudson. “I very much like the chaotic feeling that comes from all the apparent indecision and ambiguity . . .  but I also like the resolution that comes as its final state evolved out of what were just squiggles and patience!!! (Oh God . . .  I am talking artspeak . . .  Please ignore this.)”

In a recent interview, Drake refrained from such elaborations, talking more about the process of making his paintings and pencil drawings, and less about his intentions or any meanings hidden behind the lines and squiggles and stenciled forms that populate his work. The lines and squiggles sometimes stand on their own with no apparent representation, although they can morph into objects that look recognizable, like fish. Sometimes, especially on the larger painted canvasses infused with oranges, yellows, and greens, you might see stenciled insects such as bees or moths (he makes little distinction between the two) or larger animals that might be cows or buffalo. One painting features stenciled images of doors and windows, as well as some lines of text, but the cumulative effect is ambiguous — as he seems to prefer.
One pencil drawing does appear to be an overhead representation of a couple of houses, driveways, and streets in a residential neighborhood, as the forms become apparent between otherwise ambiguous sets of back-and-forth pencil strokes. Drake allows that this might be the neighborhood he grew up in, or his interpretation of it, which he arrived at because he had done a series of drawings of nothing in particular, and suddenly they reminded him of his childhood house.
“People ask, ‘What were you looking for?’” he says. “As Picasso said, I don’t show you what I’m looking for. I show you what I found.”

* * *

David Drake was born in Miami, Florida, but grew up in suburban Cleveland. As a kid, he had a fair amount of exposure to the arts; his grandparents took him to the opera when he was 10, and there were plenty of public-school trips to art and natural-history museums, and classical-music concerts.

He didn’t take an art class until he was a senior in high school. Until then, he says, he had not been a good student, but was inspired by his art teacher; “she was very supportive” . . .  and he found “it was something I really liked doing.”

“In some odd way,” he adds, “I think I picked art because it wasn’t going to be easy for me.”

He went on to study at the Cleveland Institute of Art, where he completed the five-year program that included having his own studio on campus during the fifth year, where he fulfilled the requirement to create a show for public viewing and faculty critique at the end of the year.

While earning his degree in printmaking, Drake had a couple of other significant experiences in college. He learned how to wait tables and bartend, skills that carried him through the financial ups and downs of life as an artist (currently he bartends at the restaurant Rive Gauche Bistro in Athens). And he met the woman who would become the first of his three wives.

They married and moved to Ireland, where she was promised a job in her field (ceramics); when that didn’t pan out as expected, they moved back to the States, but the disruption put enough stress on the relationship that they divorced after three years — although they remain friends to this day.

Drake moved to Chicago in 1980, where he met his second wife, with whom he was soon raising a family of three children. But they, too, divorced, in 1989.

They were living at the time in Vermont, where Drake stayed until 2004 — even though he found the artistic climate there surprisingly frustrating, largely because of what he describes as New Yorkers’ two-tiered tastes in art.

“If it doesn’t have a barn or a covered bridge,” he says, the weekending New Yorkers aren’t going to buy it; they buy their “real” art in New York City, and the quaint stuff up in Vermont.
In 2008, Drake met the woman who would become his greatest inspiration in life and art, Enid Advocate.

Their years together “probably were the most productive years of my life,” he says. “She was the one person where I felt truly comfortable . . .  if she was sitting in my studio and I was working.”

“She was an unabashed cheerleader for me at the time,” he continues, and she had “an incredible visual sense for someone who had no formal training.”

Enid and David lived together for five years and decided to get married in 2013. Then one day in 2014, she went to see a doctor because she wasn’t feeling well. After that, Drake says, “each day’s news was worse than the last.” She died three weeks later.

“She always saw the best in me,” he remembers wistfully. “I would not be here without her.”

* * *

One of Drake’s mentors once told him “not to draw the line until you see it.”

But Drake prefers not to plan; rather, to improvise, to start something before he knows what it’s going to be.

“Be present to do something,” he says, “but go in with as little of a plan as possible.”

He elaborates, musing that his approach to art also can apply to life. “I think of it as a way of mapping things, and how we map things largely determines the landscape we will work in and with, the limit of the landscape we will create. The minimizing of plan is a matter of being open and receptive. . . The will is still certainly at work — I want to create — but one needs to recognize all the much larger things that are at work. . .  All in all, it is a pretty good metaphor for life, especially if life chooses to cooperate.”

Having studied printmaking in college, Drake says, “I don’t think like a painter. I think like a printmaker.”

And printmaking is more a drawing process than a painting process, which “makes what I generally do different from what painters generally do . . .  I really like the process of drawing.”

He likes when other artists leave clues to their thought processes, and he does it too — like when he decides to move a line that he has drawn in pencil, creating a sense of motion because you can still see the pale shadow of the old line. “You can erase a line, but it leaves a ghost.”

The content of his paintings and drawings, he says, are “always ambiguous in my mind.” In the interview, he talks about drawing as a way of interpreting the world, and the importance of “feeling” what you are drawing as it comes to life in whatever form. So the art is not about what it represents, but what it feels like.

He mentions the philosopher Susanne Langer, who wrote, among other things, that “art is the articulation of feeling.”

Asked what would be the best compliment someone could make about his work, Drake pauses for a moment, then answers:

“When somebody wants one of my pieces, because they like what it represents to them, they like what I’m doing, that they appreciate how I look at the world.”

* * *
David Drake will have a show from June 16 to July 8 at the Davis-Orton Gallery in Hudson, featuring roughly ten of his pencil drawings, and two larger, painted canvases.

Copyright 2018 Stephen Leon

Friday, February 23, 2018

UNMASKING A DISEASE


Medical professionals team up for Albany-based study they hope will light the way to earlier diagnosis of scleroderma


In 1998, Sarah, a woman in her mid-’50s, was not feeling well and was referred to a rheumatologist, who diagnosed her with a chronic connective-tissue disease known as scleroderma. The diagnosis was accurate, and Sarah received treatment for her immediate symptoms, but she was not sufficiently educated on the potential complications from her illness — especially kidney disease, and the symptoms that might have been early warning signs.
When Sarah began to experience worsening discomfort and fatigue, she made an appointment to drive from her home in Schenectady, NY, to Pittsburgh to see Dr. Virginia Steen, a highly regarded authority on scleroderma and renal health. Sarah knew she didn’t feel well, but she didn’t know how to interpret her symptoms, or that her illness could lead to kidney failure. And she was so exhausted traveling to Pittsburgh that she made an unplanned overnight stop to gather strength to finish the trip.
Sarah made it to Steen’s office the next day, but had a grand mal seizure in the waiting room. In the space of a few days, she suffered kidney failure, heart failure, and multiple strokes — all of which could have been avoided.
Sarah survived, but she was never the same. When she was cleared to leave Pittsburgh and come 
Dr Lee Shapiro
home, Steen referred her for ongoing care to Dr. Lee Shapiro, a Saratoga Springs-based specialist who had trained at the renowned scleroderma center in Pittsburgh.
“The treatment that could have spared her,” says Shapiro, “was education — of the risk of renal crisis, and of the warning signs of severe hypertension, and instruction in home monitoring of her blood pressure on a regular basis . . .  If she had been instructed to check her blood pressure when she felt poorly in any way, she would have quickly recognized the new development of severe hypertension. She would have [known] to contact her rheumatologist so that therapy with an ACE [angiotensin converting enzyme] inhibitor could have been immediately initiated and titrated upward . . .  until blood-pressure control was achieved.” 
“She went out there looking like a normal person,” Shapiro says. “And she came back in a wheelchair, on dialysis, in heart failure, confused, and with one side paralyzed.”
“Her son asked me, if there’s a treatment, why did this have to happen?”

* * *

Scleroderma is a chronic connective-tissue disease. There are two major classifications of scleroderma — localized and systemic — and subcategories within those. Historically, the disease has been difficult to diagnose because it presents with many different symptoms, which can fall within a variety of other diagnostic groupings and may overlap with other diseases.
In the localized form, also known as “morphea,” patches of thickening skin develop without any other disease features. 
Systemic sclerosis, which can emerge slowly or suddenly, combines three features: autoimmunity (if blood tests are performed, there are almost always auto-antibodies present), fibrosis (excess collagen deposits in the skin, and sometimes in the lungs, heart, or liver), and vascular (blood vessel) disease.  Early on, scleroderma can present with puffy hands, numb hands (carpal tunnel syndrome), discolored fingers, heartburn or difficulty swallowing bread or meat, and occasionally, cough and shortness of breath.  Skin thickening can vary greatly in extent, almost always involving the digits, sometimes the face, less often rapidly spreading to involve the upper arms and legs and even the chest. (For more information, see scleroderma.org  or steffens-scleroderma.org.)
While experts vary in their opinions, it is thought that scleroderma may be triggered by any of the following: viral or bacterial infections; hereditary factors; exposure to pesticides, epoxy resins, or solvents; or even by an accident or a stressful event. Scleroderma affects more women than men, typically between the ages of 30 and 50.

* * *

Shapiro likes to make the point that scleroderma is as common as multiple sclerosis, and more common than cystic fibrosis — yet the latter two are household words, while scleroderma remains relatively unknown.
“If you went out and asked a hundred people about scleroderma,” Shapiro says, “the largest group would say they had never heard of it. The second largest group would say, ‘I knew someone who died of it.’”
And if the general population lacks familiarity with scleroderma, the medical community is only slowly coming up to speed, especially when it comes to education and early diagnosis.
Patricia Dalton Fennell
Patricia Fennell
Patricia Fennell, a clinician, researcher, and chronic-disease expert — and the founder and president of Albany (NY) Health Management Associates — offers this example: a patient’s arm pain lands them in an orthopedic office, where they might be diagnosed with carpal tunnel syndrome, when they may be suffering with scleroderma instead of — or in addition to — carpal tunnel. So they are treated for the latter, while treatment for scleroderma is delayed for however long it takes to get a proper diagnosis.
And this is just one example. In Sarah’s case, she was not misdiagnosed, just miseducated. But the failure to diagnose progressive scleroderma at all can lead to renal failure, or two other outcomes that have eclipsed renal crisis in terms of their impact on life expectancy: pulmonary hypertension and pulmonary fibrosis.
The historically high numbers of poor scleroderma outcomes have created a stigma of dread, for patients and even for some doctors, around making a scleroderma diagnosis in the first place.
In most instances today, Shapiro asserts, scleroderma “is not a life-shortening or life-threatening disease. And all of those complications that are potentially life-threatening have treatments now that didn’t exist a few years ago.”
But most people don’t know that, and if they have heard of the disease before receiving a diagnosis, they may “have a preconceived notion about it, and it’s a very dark one.”
Another problem, he says, “is that a lot of doctors share this view of scleroderma as about the most horrible diagnosis they can give, not recognizing the gradations of severity. I’ve had patients come in and say what their [previous] doctors have told them.”
“One said, ‘You either have scleroderma or lupus, and you better hope it’s lupus.’”
Shapiro diagnosed scleroderma, and the patient was treated successfully — but with the previous doctor’s words still fresh in her mind, she had to go on medication for anxiety-related hypertension.
In another case, the doctor said, “You don’t know how lucky you are you don’t have scleroderma.” And before she left the examination room, he popped his head in the room again and said, “You really don’t know how lucky you are you don’t have scleroderma.”
Again, Shapiro diagnosed scleroderma. And like the patient in the previous example, she’s in good health today.
With growing awareness of scleroderma, more patients are getting the diagnosis they need. Shapiro is hopeful, but acknowledges that there are still doctors who are afraid to have to make a diagnosis. “And I think they aren’t quite aware of the spectrum of the disease. You can have just a little bit of scleroderma. Or you can have disease that doesn’t progress.”
“The sooner we make a diagnosis,” he says, “the better we can avoid catastrophic complications in patients with more aggressive [forms of the] disease — and reduce the anxiety of everyone else.”

* * *

Mindful of the need for better education and awareness, Shapiro and Fennell have teamed up to create a research study titled “Scleroderma: Pathways to Diagnosis.” The two conceived the study when they talked at a scleroderma conference in 2016, and spent six months designing it along with two other primary investigators, Dr. Nancy Dorr and Roberta Lukasiewicz. The study was launched in the summer of 2017, and Fennell is surprised and pleased at the results thus far, as the study requires voluntary participation by patients walking through the clinic door.
“Why we’re so excited,” she says, “is we have about 80 participants.” In the doctor’s office, they are invited to participate in the study — "and there is a regulated way to do it. We don’t pressure them. If we had gotten 20 by this point, we’d be thrilled.”
The researchers are collecting data on scleroderma patients to compile information on their diagnostic experience. “With most people,” Shapiro says, “it’s a very visual diagnosis. You don’t need to be a physician to suspect it. So we’re gathering these stories to see how long a path it was, what were the diagnostic pitfalls, and finally, what clued either the physician or the patient to the diagnosis . . . and we want to record patients’ best recollections of how the diagnosis was presented.”
Participants take a qualitative, open-ended questionnaire, either right there in the office, or later at home.
“At its broadest, our hypothesis is that it takes a long time for these patients to get diagnosed,” Fennell says. “The big goal is to shorten that diagnostic window for patients.”
With this data, the researchers hope to improve doctor training and, ultimately, to shorten the time it takes to get a correct diagnosis of scleroderma. If the problem is that not enough doctors want to do this work, and patients are waiting too long to be diagnosed, Fennell says, “OK, but in order for us to change something in the medical world, we have to design something that establishes there is a problem worth changing. We know there’s a problem, but we have to substantiate it.”

* * *

In 1977, Shapiro was finishing up his studies at Columbia University’s medical school, and it was time to submit his preferences for where to do his internship. And he was not pleased when he was assigned to Pittsburgh’s Presbyterian University Hospital, which was far down on his list.
“I may have overshot the mark in terms of my aspirations,” Shapiro recalls, “but I was initially surprised and disappointed to end up in Pittsburgh.”
What Shapiro could not have known at the time was that fate had taken its first step in guiding the young doctor toward a career specializing in scleroderma. And Presbyterian University Hospital (now the University of Pittsburgh Medical Center) “was the national center for scleroderma at the time, unbeknownst to me when I got there.”
It didn’t take long for Shapiro to become more familiar with his surroundings, and with the disease. “My very first patient in my clinic had scleroderma,” he says, “and that got me acquainted with the physicians there who were focused on it.”
Shapiro recalls that it was “a very important, very dramatic time for scleroderma.” There was no treatment yet for the complication known as “scleroderma renal crisis,” but while he was there, an ACE inhibitor was being developed, which changed the one-year survival rate from 15 percent to 85 percent. “So the treatment came out 40 years ago, it’s still used, it still works. If the diagnosis is made too late, the life might be saved, but the kidneys will fail. About 50 percent of the patients still end up on dialysis.”
Shapiro stayed in Pittsburgh for five years, still focused on general rheumatology. “I did not start out with aspirations to be a scleroderma researcher.”
He accepted a job offer in the Albany area in 1982, with no specific intention of seeking scleroderma patients. But he got referrals anyway, because he had come from Pittsburgh.
Shapiro began to warm up to scleroderma as a career, in part because the area had a scleroderma foundation and a patient support group. Though he initially had thought of scleroderma practice as “difficult and depressing,” as it became more a part of his work, he noticed that “it wasn’t as difficult and depressing for me [as it was for other doctors], because I was already familiar with it.”
And he began to pay attention to what one might call nudges from the universe. In 1999, while on a self-imposed break and visiting a friend in London, they took a walk, turned a corner, and saw a sign that read “Scleroderma Clinic.”
“I took it as a sign,” he says. He stayed for three and a half months, working at the clinic and sharing an office with a junior faculty member, who now runs the clinic. Today, 19 years later, they do research together.
At a scleroderma walk in 2009, Shapiro saw a woman, Helen Polenz, whose daughter, Ann Steffens, he had cared for. Unfortunately, there was no treatment for the complication Steffens had developed, and she died in 1997. At the 2009 walk, Polenz handed him an envelope, and said, “This is for your research.”
It was a check for $50,000, and Shapiro used it to set up the Ann Steffens Scleroderma Research Foundation, which he directs today.



More Information: Scleroderma Foundation | Ann Steffens Scleroderma Research Foundation



Copyright 2018 Stephen Leon

 

Friday, January 12, 2018

THE DOCTOR OF DROWSY


In his new book, local author and sleep researcher Paul Glovinsky says the solution to insomnia may have more to do with getting sleepy than trying to fall asleep

by Stephen Leon

Dr. Paul Glovinsky calls it his “Alice in Wonderland” moment. A graduate student studying neurophysiology at the City University of New York, he was doing grad work at Montefiore Hospital in the late 1970s when, during a lunch break, he became fascinated with a wide door bearing the sign “Laboratory of Human Chronophysiology.”


Dr. Paul Glovinsky
Dr. Paul Glovinsky
“I opened it, and I went in, and met people working there,” Glovinsky recalls of his first peek into the world of circadian cycles and sleep science. “It was the excitement of a new field. Everyone I was talking to, it was a feeling of exploration. People had a sense that they were in a special place.”

And they were: the field of sleep research was about to experience exponential growth. Prior to this era, there had been some clinical studies (REM sleep was defined and linked to dreams by researchers in 1953), but the field — led by pioneers William Dement and Michael Jouvet — was still young. “There were many people studying circadian rhythms, but mainly in animal models,” Glovinsky says.

The sleep center at Montefiore was one of only two in the country at the time (the other was at Stanford University); today, in Glovinsky’s estimation, “there are probably over a thousand.”

Glovinsky, who was born and raised in the Detroit area and graduated from Yale University, received his Ph.D. from CUNY and wrote his dissertation on sleep. Today, he is a leading expert on the subject: along with his longtime colleague Arthur Spielman, Glovinsky wrote The Insomnia Answer: A Personalized Program for Identifying and Overcoming the Three Types of Insomnia (Penguin Books, 2006), and You Are Getting Sleepy: Lifestyle-Based Solutions for Insomnia (Diversion Books, 2017).

The Insomnia Answer
With The Insomnia Answer — widely respected among Spielman and Glovinsky’s peers, and influential in subsequent treatment of insomnia — the authors introduced three distinct sets of factors associated with insomnia: predisposing, precipitating, and perpetuating. “Predisposing” refers to characteristics people are born with; “precipitating” factors are stressful life changes including divorce, job loss, and the death of a loved one; and “perpetuating” factors are the maladjusted behaviors people employ to compensate for sleeping poorly. While the stress of precipitating factors is likely to recede over time, or go away altogether with a new job or spouse, the perpetuating behaviors often remain.

“The 3P behavioral model,” wrote reviewers Frank M. Ralls and Swala K. Abrams in the Journal of Clinical Sleep Medicine, “is beautifully explained and serves to logically demonstrate to the readers how insomnia occurs acutely and how it may become chronic and self-perpetuating.”

Patricia Fennell, who founded Albany Health Management Associates, Inc., and has worked with Glovinsky at the intersection of sleep disorders and chronic illness, adds that “precipitating factors can include a car accident, a fall, or even a severe flu. A kid comes home for Thanksgiving. It’s flu season; she gets sick. She goes back to school and she gets seriously ill. It turns out, an acute autoimmune disease has been triggered. It affects her sleep. She has pain, which also affects her sleep. She has to take new medication, which also can affect her sleep. And thus, a likely precipitating factor, the flu, produced a sleep disorder and the autoimmune condition.”

“You do not have to have a chronic disease to have a sleep disorder. But show me somebody who has chronic disease, and I’ll show you somebody who probably has sleep issues.”

You Are Getting Sleepy
With You Are Getting Sleepy, Spielman and Glovinsky turned their attention away from the perpetuating factors they had covered so well (along with other subsequent researchers) in The Insomnia Answer, and trained their sights on predisposing factors they considered less well-covered, including chronic conditions such as depression, anxiety, circadian rhythm disorder, and hyperarousal, any of which can sap a person’s energy during their waking hours and throw off their sleep cycles. (To that list, Fennell would add chronic diseases such as multiple sclerosis, arthritis, cancer, diabetes, and heart disease.)

In clinical trials, Spielman and Glovinsky had come to a new conclusion: some patients were focusing too much on getting to sleep and not enough on getting sleepy.

“Sleepiness — that’s my new hook here,” Glovinsky says. “It’s a common result of an experience with insomnia or chronic sleeplessness that people become more attuned to the question of whether they’re going to sleep or not,” and they make too much of an effort to try to figure it out. “The paradox is that the more you make an effort to sleep, the less likely you will get to sleep.”

People who aren’t getting enough sleep at night often get sleepy at other times of the day, when it interferes with work or family or the general quality of their life. So Glovinsky and Spielman shifted their focus to “trying to get people sleepy at the right time and place. There are things you can do to promote sleepiness.” And recognizing that there is no one-size-fits-all answer to insomnia, they wrote and organized You Are Getting Sleepy in a way that encourages readers to jump around and look for strategies that fit their personal experiences.

Before they began writing, the authors knew their clinical work was opening up new ground to cover in a book, but they faced an ominous new obstacle: Spielman was diagnosed with cancer and began to undergo chemotherapy. In 2014, while Glovinsky was on vacation, he was dogged by the realization that the clock was ticking, and called Spielman from Greece to insist that they had to get to work on it as soon as possible. Spielman, whom Glovinsky considered the originator of many of the concepts they developed together, contributed to the project until he died in 2015.

Although Glovinsky was more the writer of the pair, he now had to face the loss of his trusted colleague and sounding board. “That was difficult. It took a year before I picked it up again. Writing was not the issue. But in 30 years, I always had him to bring things to me.”
Glovinsky, who lives in Columbia County and New York City with his wife of 35 years, Maureen (with whom he has three grown sons), finished the book in 2016, and it was released this year by Diversion Books.

Glovinsky met his two most influential lifelong colleagues — Spielman and Aaron Sher — on the same day in 1979 while doing his graduate work at CUNY. Today, Glovinsky practices psychology at the St. Peter’s Sleep Center in Albany, where Sher was medical director until his recent retirement. Glovinsky also was, for many years, an adjunct professor of psychology at the Graduate Center at CUNY in New York City, where Spielman taught until his death.

Insomnia and associated problems affect more than 10 percent of the population, Glovinsky says. And people who rely on sleeping pills to solve the problem tend to believe that only the pills can cure the insomnia, which he argues is not productive in the long run. “My thrust in writing the book is that sleep is in you,” he says. “Ultimately, you have to believe you can sleep again.”

Looking back at the day he decided to push open the mysterious door at Montefiore Hospital, Glovinsky marvels at how well that fateful impulse played out.

“Sleep, it turns out, is intimately related to just about everything that happens in waking life. It effects our cells, organs, systems, behaviors, moods, thoughts, and social roles. Few of us had any inkling of this range back in the 1970s, as we were making career choices. We have been astounded by new discoveries concerning sleep in every year since. That’s why, I think, my walking through that Alice in Wonderland door at Montefiore turned out to be such a serendipitous choice.”
 
@ Copyright 2018 Stephen Leon