Category Archives: Health

COVID: The Sequel

Mass vaccination and adjusted social behavior may finally get the pandemic under control. Then the medical world will have to turn its attention to the next chapter—millions of people suffering from long-haul COVID

By Stephen Leon

May 2, 2021

As the pandemic took hold in the United States in March 2020, Caroline, a healthy, athletic woman in her late 20s, began to feel unwell. There was no COVID-19 test to be had at that point, but she called her clinicians to describe mild to moderate symptoms such as fever, respiratory difficulty, gastro-intestinal irritation, and loss of taste and smell—which came and went, and not all at the same time.

Caroline’s clinicians diagnosed her remotely as having COVID.

The fever, the teeth chattering, and the gastro symptoms went away—but not the fatigue, the body pains, or the neurocognitive symptoms, including sleep disturbance. Ten days later, 20 days later, a month later, she still hadn’t fully recovered.

Finally, eight months or so after the onset, Caroline had a COVID test, but it was negative, and an antibody test showed no antibodies. And without a positive test or antibodies in her system, she has found it difficult to find someone to treat or manage her condition. Most clinicians tell her that her persistent symptoms might or might not be COVID. And some say things like, “I have no idea what to tell you,” or “Are you sure this isn’t stress?”

Dan, in his late 30s, is a care provider for diagnosed COVID patients and their families. For a while, he continued to test negative, but began having symptoms about eight months ago. He was never hospitalized, and never had a positive test, without which the clinician who was seeing him would not diagnose him, in spite of all of the clinical indicators.

Dan still suffers from many long-term symptoms; his new clinician is helping him put together a team of specialists to develop and manage his treatment.

Caroline and Dan appear to suffer from what has come to be known as “long-haul COVID,” in which some manifestations of their illness just don’t go away, with symptoms sometimes mimicking those of other types of chronic illness.

In fact, more prior investment in chronic illnesses, and a better understanding of how they work, could have helped us to prepare for long-haul COVID, says Ken Friedman, Ph.D., a retired professor of pharmacology and physiology and a longtime researcher of chronic conditions. Instead, the medical establishment in the United States has been slow to recognize and research chronic illness, and soon will pay the price: dealing with an onslaught of as many as 9 million long-haul COVID cases in the coming years in the United States alone, based on Friedman’s statistical analysis of recorded COVID cases.

Patricia Fennell, MSW, LCSW-R, a researcher and clinician who has been researching and treating chronic illness for more than 30 years, agrees with Friedman’s assessment. “The medical establishment,” she says, “has been slow to recognize the need for specific treatment approaches for the chronically ill, and to integrate them into their medical education curricula. And from what I can already see in requests for treatment of long-haul COVID, we are not prepared for what’s coming.”

So far, Friedman warns, “we have not seen a response proportional to the severity of the crisis that is about to befall us.”

***

Friedman, a Brooklyn native, has a combined degree in biology and chemistry from Lawrence College in Appleton, Wisc., and a Ph.D. from the State University of New York at Stony Brook, and was a postdoctoral National Institutes of Health fellow at UCLA before becoming a staff fellow at NIH. From there, he became an assistant professor at New Jersey Medical School in Newark. Friedman had decided he didn’t want to be a doctor—“I really didn’t like the sight of blood”—and was more interested in helping people through research.

One day, his desire to help people hit so close to home that it forever changed the trajectory of his research career.

Friedman’s teenage daughter, Deborah, was an academic standout and was admitted to Tufts University after her junior year of high school. But after a few months at college, she became very ill, and explained her symptoms to her father. “I said, ‘Honey, you have mono. Go to student health services. Mono is very common in college students. They’ll know what to do.’ ”

“That was the biggest mistake of my and her life,” he says. “They missed the diagnosis, told her she had depression, and sent her back to her dorm room. Eventually she got so sick that she called me one afternoon and said, ‘If you don’t rescue me, I’m going to drown in my own vomit.’ ”

“I was five hours away and couldn’t do it,” Friedman says, but he did track down a nurse to look in on her, and she took Deborah to her house for observation. After two days, the nurse called him up, and said, “I don’t know what the hell she has, but you better come get her.”

When Friedman finally picked up his daughter in Boston, he had to carry her into the car, and then carry her out again when they arrived home in New Jersey. He began taking her around to see other faculty at New Jersey Medical School, where he taught.

“Everyone at my medical school threw up their hands and said, ‘I can’t help you’,” Friedman recalls. “If a faculty member can’t get help at his own medical school, what is the recourse?”

Friedman began poring over the available literature on Deborah’s symptoms, and eventually decided she had chronic fatigue syndrome (now known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS). One of his colleagues was studying it, but he wouldn’t see Deborah because she hadn’t been sick long enough; a patient had to be ill for six months or more to get a CFS diagnosis.

“So I went back to the literature, and I found that physical therapy was sometimes helpful.” Friedman found a physical therapist who did something called “Rolfing,” a process that reorganizes the body’s connective tissues, named after its founder, Dr. Ida P. Rolf. This therapy had shown some success with CFS patients, and it did help to get Deborah walking again.

As she gradually began to improve, she wanted to go back to school. “We warned her of her limits,” Friedman says, but as she was young, she sometimes exceeded them. It took six years, but she did get her degree.

After graduation, Deborah Friedman worked for companies like Raytheon and Lockheed. “It was a struggle,” her father remembers, but “eventually she applied for and obtained a position with the Johns Hopkins Applied Physics Laboratory in Baltimore.”

The long hours and pressures of that job caused her to “crash severely,” Friedman says, “to the point where we had to sell everything she had and bring her up to Vermont, where [Friedman and his wife Ruth] were living, to resuscitate her.” Finally, she went back to Harvard Adult Extension, where she could take one course at a time, and received a master’s degree about a year ago.

“Having a chronically ill child was not something that we had envisioned,” Friedman says. “It is life-changing not only for the patient, but for the parents. My initial objective was to solve it, to cure her. And that was based upon the belief that this was a disease like any other disease,” caused by an infectious agent, “and therefore cured by the removal of that infectious agent.”

“And that belief was based on what was written in the medical literature. But the medical literature is wrong.”

***

“For many doctors, the strange symptomology of long-haul COVID calls to mind another mysterious, poorly understood condition: myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome,” wrote Moises Velasquez-Manoffin in a January 21 New York Times article titled “What If You Never Get Better From COVID-19?”

Velasquez-Manoff went on to point out that “ME/CFS-like syndromes have been linked with infections for more than a century—including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009.”

And according to Fennell, there is growing evidence that COVID-19 already has ignited a public-health crisis that will persist long after vaccinations help us reach “herd immunity” and many of us put our masks away. “We are getting increasing numbers of requests from medical professionals who either have personally suffered COVID with the long-term symptoms themselves, or their family members have,” Fennell says. “We are also getting requests for consultation from physicians who are overwhelmed by the emotional burden of caring for COVID-19 patients. Some of these clinicians are traumatized from the care they are providing, and are suffering long-term after-effects themselves, which is part of the larger, expanding public health issue of COVID-19.”

In addition to SARS and H1N1, Friedman says, there are “post-acute infectious syndromes” associated with many infectious diseases, among them, mononucleosis, Ebola virus disease, and Lyme disease.

But some of the early research into long-haul COVID and its treatment has not taken past research into account. “What they have done,” Friedman says, “is they have ignored the relevant data of other diseases. Why aren’t we looking at these all together?”

Friedman and some other researchers contend that where symptoms of long COVID are similar to those in patients suffering chronic illness in the post-acute phase of any of these diseases, treatments previously developed for those diseases may be effective for long COVID.

“Obviously we want to learn as much as we can about each new [infectious disease],” Friedman says, “but in the meantime, treatments have been developed for symptoms which are similar across the spectrum. Why not apply what we already know, and consider how the diseases may be similar?”

“Diseases tend to be viewed as silos,” he continues, “as unique symptoms that have to be treated as no other disease is treated. The treatment is only effective for that one disease and does not apply to any others. That is not true.”

“The body does not care what the infective agent is.”

He offers the analogy that the body has a finite playbook of responses for infection, and it will employ those responses to the best of its ability to overcome the infection.

But, Friedman says, in long-haul COVID—as in ME/CFS—the body’s response is “overblown.”

“The plays in the playbook are not perfect. And some of those plays can do damage. Where medicine comes in, is that sometimes the physician can control the plays in the playbook so that they do not do damage.”

The failure to apply models of care previously developed for ME/CFS, Friedman suggests, is a symptom of a more grave issue: The medical establishment still does not fully recognize chronic illness “as a serious medical condition worthy of treatment. I think that most chronic illnesses are not given as serious a consideration as are acute illnesses.”

With acute illness, he continues, “you go to a physician and describe your symptoms, your physician develops a theory of what is wrong with you. … And once the underlying cause is found, the physician will know how to treat it. But for these chronic illnesses that don’t have a ‘tell,’ it becomes much more difficult to diagnose, and much more difficult to treat. So that’s why these conditions are not treated.”

And the U.S. government, he adds, “was very narrow in its approach to dealing with the pandemic. They put all of their eggs in one basket and focused on developing a vaccine, and avoided development of a treatment.”

“The CDC already has a model of care in place that would work for long-haul COVID, and that model of care is the model they developed for ME/CFS. The question is, ‘Why they would not implement that model of care now?’ ”

“If they would fully implement that model, both the ME/CFS patients and the long-haul COVID patients would be receiving care right now.”

“Going back 30 years,” says Fennell, “I, among others, have developed treatment approaches for long-term chronic illness. They are there. They should be adapted and used.”

Instead, Friedman fears, most people are not aware of or prepared for the “dim picture” that awaits us down the road, with between 3 and 9 million people suffering from long-haul COVID, according to his statistical model.

“That’s a lot of people.”

Potentially making matters worse, 3–9 million long-haulers is a projection based on the number of people who had been diagnosed with COVID as of a few weeks ago. But two current trends do not bode well: (1) the refusal of a significant number of persons in the United States to be vaccinated, and (2) the ongoing failure by the FDA to approve any treatment of COVID in its early stages. If these trends continue, then the number of long-haulers is likely to exceed the estimate.

“The prognosis in terms of disability, and the number of people requiring social and financial support, is going to be very large in comparison to other diseases,” says Friedman. “And that should be a concern.”

END

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

Effective April 26, 2021, Kenneth Friedman has received an academic appointment as adjunct associate professor, Department of Medicine, School of Osteopathic Medicine, Rowan University, Stratford, N.J.

A Life in Hospice

1 Reply

Deborah Lee talks about the joys, challenges, and rewards of her 30-year career in Hospice: A Memoir of Life Among the Dying

By Stephen Leon

The song playing in Deborah Lee’s head wasn’t just a temporary annoyance, like a tune that gets lodged in your brain after you hear it over the supermarket sound system.

It was a sign that she had found her calling.

The story of “Graciela Hernandez” is such an important milestone in Lee’s 30-year career as a hospice worker that she decided to tell it in the first chapter of her 2020 book Hospice: A Memoir of Life Among the Dying.

The chapter, titled “There’s a Lot They Don’t Teach You in Graduate School,” recounts how Lee, then a relative newcomer to social work, had been assigned to the Hernandez family because they were not feeling a positive connection with the nurse who had been visiting from Lee’s hospice team. Graciela, 15, was dying of cancer; as Lee prepared to ring the doorbell of the Hernandez family on a February day in 1991, she worried that she, too, would fail to connect.

For one thing, she was afraid there might be a cultural barrier with Graciela’s parents, who were Mexican-American. And while the parents were losing their only daughter just as Graciela was coming of age, Lee was eight months pregnant, visibly ready to experience the joy of bringing a new child into the world.

Mr. and Mrs. Hernandez were polite but cool; the girl lay comatose on her bed. Lee stayed by Mrs. Hernandez’s side while she administered a feeding tube, and as Lee sensed a slight warming from the woman, she found herself quietly shifting from an intellectual approach to a more intuitive one. Back at the kitchen table, Lee began to notice a song that was running through her head.

“I was relatively new to hospice, and relatively new to social work,” Lee recalled in a recent interview. “I was not accustomed to trusting my gut in my work. I was still pretty concerned with doing things ‘right’ [here Lee, sitting across from me, raises her fingers in quotation marks]—So when I first started hearing that song in my mind, it was more a distraction than anything else. I didn’t initially perceive it as having any clinical relevance.”

But the song would not go away, and Lee couldn’t ignore it any longer.

“I started to feel like I was supposed to say something about this to the family. And that feeling just kept getting stronger … to the point that it almost felt like screaming in my mind: Say it! Say it! So I did.”

“Never in a million years could I have anticipated what that unleashed.”

Lee told Graciela’s parents about the song in her head—“You Are My Sunshine”—and added that she must sound crazy, but felt for some reason that she needed to share it. As Lee waited for a reaction, first Mrs. Hernandez, then Mr. Hernandez, burst into tears. The song, they explained, was their daughter’s favorite as a young girl. Then Lee burst into tears as well.

Suddenly, the family’s experience with the previous nurse made sense; “the Hernandezes,” Lee wrote in Hospice, “felt that she did not truly understand what they were going through. They needed someone to see past their controlled, critical presentation to the agony within. When I ‘heard’ their daughter’s song—despite the disease, despite the passage of many years—they knew I could hear them.”

“As my hospice work continued,” Lee says, “I came to recognize this experience as what I call a ‘God moment.’ Hospice is full of God moments if you listen for them.”

***

Deborah Lee was born in Chicago and raised there until she was 14, when she moved with her mother and stepfather to the Milwaukee area. Her parents had divorced when she was 2, and her father also remarried. Her complicated family life as a youth fed her restlessness as a young woman; in her college years, Lee “wandered around a bit” and attended three of them, “but the piece of paper says Northwestern.”

Next, she fulfilled a dream to move to California, where she lived from 1978 to 1983. “And that was a very significant awakening to the real world,” Lee says. “My California fantasy was that that was where all the hippies lived. And I was going to go out there and be a hippie.”

However, she says, “absolutely nothing that happened in California worked out the way I hoped it would. The whole hippie ship had sailed by that time. In retrospect, it was a good experience. Let’s just say I got a lot out of my system. At the end of five years, I slunk back to Chicago with my tail between my legs.”

Lee returned to her hometown “feeling like I needed to get serious about what I was going to do when I grew up.” She worked for two years as a legal secretary for a divorce attorney in downtown Chicago; she liked her boss and enjoyed the job. But the wheels in her head were turning.

“I had two insights during the two years I worked for him,” she says. “The first was that the most enjoyable part of the job for me was listening to his clients pour out their hearts about what they had been through. I encouraged them to get this off their chests with me, because unlike my boss, I wasn’t charging by the hour.”

“The second thing I realized is that I was not going to want to be doing that same job when I was 50.” At that point Lee decided it was time to go to graduate school “and have a career and not just a job.” She applied to Loyola University in Chicago, where she earned a master’s in social work.

The idea of social work had been bubbling under the surface for some time. As a teen, Lee had enjoyed hanging out at a drop-in center staffed by students doing graduate study in social work. Also, “my stepmother was a social worker. And I admired her tremendously. So you put all that together with the fact that I enjoyed listening to my [lawyer] boss’ clients and trying to help and support them.”

There was one more piece to the puzzle, and her therapist helped her figure it out.

“I essentially grew up with four parents,” Lee explains. “They were all good people, but they were not perfect. I was certainly not abused or deprived in any way, but I wasn’t particularly happy.”

After her return from California, she went into therapy for about a year. “Toward the end of that time, I told my therapist that I was planning to go to social work graduate school. He asked me, ‘What is it in yourself that you’re trying to fix?’”

“I came to the realization that I was still trying to sort out the many mixed and conflicting messages I had gotten while growing up. And that was basically it; he gave me the insight that there was something I was trying to figure out by going to graduate school.”

***

About a decade into her hospice career, Lee got to thinking that she was having experiences, through her patients, that the average person didn’t have. “And I started writing about them,” she says, “just to process my own thoughts and feelings about them.”

Twenty years later, at the end of her 30-year career in hospice, Lee had about 20 pages’ worth of stories. “When something happened that I felt was worthy of writing down, I wrote it down. But I still was not thinking ‘Oh, I’m going to write a book.’”

After the pandemic hit, and it became apparent that it was going to go on for a while, the now-retired Lee was looking for something constructive to do with her time. And she started thinking seriously about turning those 20 pages of stories into a memoir. But she was unsure which direction to take; some of the stories (like Graciela’s) were interesting case studies, while others were more like educational essays. She could take a pragmatic approach and write an educational book for hospices to buy in quantity and give to families, or she could write more of a memoir.

At that point, Lee enlisted the services of a freelance editor, Elizabeth Judd, for what was called a developmental assessment. “She had done a lot of editing on books related to health care and to spirituality; she was the perfect person to guide me,” Lee says.

“She was a tremendous encouragement to me. She told me that she really enjoyed the excerpts that I sent her, and that it was one of the more gratifying things she had edited recently because she actually felt I was a good writer.”

And Judd nudged her toward memoir: “Write more stories. Write more stories.”

Hospice is a testament to the complex, poignant, rewarding, and often spiritual nature of hospice work. It also is eye-opening for anyone who might wonder why people like Lee do such “depressing” work.

“First of all, it’s not depressing. We, the hospice team, walk in and find some miserably sick person lying in a bed, and there’s lot we can do to make them better. When the family looks at their dying loved one, they see what I call ‘ghosts.’ They see not just the person in front of them at that moment, but all the people that he or she used to be. We, the hospice team, don’t know all those people. … We only know the person who is there now. That gives us a different perspective than what the family has, and a greater degree of objectivity.”

“For me, and probably the majority of hospice workers, there is a strong spiritual component to our work. Hospices themselves are not religious organizations. … But the majority of hospice workers that I have known bring some sort of spiritual perspective with them. They may or may not be religious, but the majority of them are highly spiritual. For me personally, I have a very strong sense that hospice work was my ministry.”

While some theories of human development end with physiological maturity, the psychologist Erik Erikson postulated eight stages of development through life, the last being “ego integrity vs. despair,” in which people attempt to reconcile their life successes and failures. Lee says she used the Eriksonian eighth stage a lot in her work with hospice patients.

“All of us want to think that our lives have some kind of meaning,” Lee says. “And as the hospice patient tells me about himself, I can help them see what some of that meaning might be and I can validate that for them.”

“Sometimes they have regrets. I try to help each person sort out those things that they felt good about, and help them come to a place where they can feel that their life overall had a positive effect. Some people, sadly, are truly in despair. There were those few that truly felt they had wasted their lives and messed up their opportunities. And that’s not something you can fix on somebody’s deathbed. What I could give them was the opportunity to be heard and accepted by me, without judgment.”

And then there are the crazy spiritual moments that sometimes accompany the last hours of a person’s life—or maybe even the hours just afterward. These are Lee’s “God moments”: improbable situations that invite us to consider mystical explanations over rational ones. A group of robins gathering in a tree outside a hospital window in the middle of a snowstorm. A red balloon that hovers around an apartment entryway on a windy day, never blowing away, as if waiting for someone inside. An experienced Air Force pilot who dies a few hours before a living pilot engineers a miracle Hudson River landing of his distressed plane, carrying all passengers to safety.

While the paranormal explanations for these stories (especially the one involving “Sully” Sullenberger) can seem farfetched, still, one has to wonder: On that winter day back in 1991, by what passageway did “You Are My Sunshine” enter Deborah Lee’s brain?

The day she “met” Graciela, Lee began to better understand hospice work as her calling, and hospice patients and their families as people whose lives and connections with loved ones can be improved under the empathetic care of hospice workers.

“I learned a tremendous amount, over the course of 30 years, about how different people face their own mortality,” Lee concludes. “And that has been helpful to me in thinking about my own eventual death. I hope that when my own time comes that I can bear up as gracefully as some of the people that I met.”

Hospice: A Memoir of Life Among the Dying, by Deborah Lee, was published in 2020 by BookLocker (BookLocker.com) of Saint Petersburg, Florida.

Deborah Lee is a colleague and associate of Patricia Fennell of Albany Health Management Associates, Inc., on whose website this story also appears.

Update: The Hidden Dangers of Heat Waves

Leave a reply

By Patricia Fennell and Stephen Leon

(Updated 7/31/18)

In the first week of July 2018, a brutal heat wave gripped much of the Northern Hemisphere, smashing temperature records and taking a toll on the health and well-being of people living anywhere from California to Quebec to the Middle East. For many of us, the physical discomfort and shortened tempers were bad enough; the less fortunate among us suffered through health setbacks, some serious, and heat-related deaths were reported from many regions. In the Canadian province of Quebec, more than 70 deaths were attributed to heat. (Quebec has a more inclusive system for reporting heat-related deaths than some other provinces and states, many of which probably undercount the number of deaths in which heat actually was a factor.)

Here in the Northeast, the rest of July was not as bad as that first week, but we continue to see many days with temperatures in the 90s, nights when the mercury fails to drop below 70, and plenty of oppressive humidity. It’s safe to assume we’re not out of the steam bath yet.

(Note: the rest of this article was posted during the July heat wave on the websites of Albany Health Management Associates and Stephen Leon.)

When a summer heat wave settles over us like a 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 of worse, the 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 fully 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. If you have it, turn on the 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. Use fans to circulate the air, but avoid setting them too close to you while you sleep.

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.

Heat Waves: The Hidden Dangers

Leave a reply

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.

It’s the Inflammation

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

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

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.

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

This post also appears on the website for Albany Health Management Associates, Inc.

Unmasking a Disease

1 Reply

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

By Stephen Leon

November 7, 2018

This article is being republished to coincide with the Inter-Professional Education Forum: “Focused on Scleroderma,” being held tonight (November 7, 2018) from 5 to 8:30 PM in the Aggie in the Robison Center (65 1st Street, Troy, New York) at Russell Sage College. Sponsors include the Sage Colleges School of Health Sciences, Albany School of Pharmacy, the Steffens Scleroderma Foundation, and Albany Medical Center for Rheumatology. The post first appeared in February 2018.

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 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 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.

This post also appears on the website of Albany Health Management Associates, Inc., directed by Patricia Fennell, MSW, LCSW-R.

The Doctor of Drowsy

Leave a reply

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.”

“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, 2006), and You Are Getting Sleepy: Lifestyle-Based Solutions for Insomnia (Diversion, 2017).

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.”

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.

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.”

stephenleon7@gmail.com