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Focus on Health

By Colleen Merlo, LMSW

Colleen Merlo

One need not look very far to know that we are facing a mental health crisis. CDC data shows that youth are reporting high rates of poor mental health and suicidal thoughts and behaviors, and a recently published report by the Surgeon General declared loneliness an epidemic.

For many Long Islanders, these findings are not merely statistics or verbiage. This crisis is affecting their daily lives. It may show up with a child pleased to not attend school, or through a decline in the cognitive health of an aging parent. Many of us are feeling a rawness that we cannot quite put to words, nevertheless we know it is there. For some of us it shows up as irritability and angst; others are walking around feeling exhausted.

Living through a pandemic has changed all of us and the way we think about mental health, and left us less resilient as a society. On the bright side, the pandemic has been a catalyst for increased discussion about mental health. We need to make sure this trend continues. In the past, when people thought about mental health, the topic took a myopic view that focused on illness.  While mental illnesses are common, widespread, and can affect anyone (around half of people in the U.S. will meet the criteria for a diagnosable mental health condition at some point in their life), this view left many people overlooking mental health and wellness, and the ways we can foster community mental health. 

Every day we have a chance to focus on emotional wellness and incorporate tools into our lives. We also have an opportunity to better recognize and respond to mental distress. An important first step is to learn common warning signs for mental health conditions or crises and how to respond.  Mental Health First Aid training takes the fear and hesitation out of starting conversations about mental health and substance use problems by improving understanding and providing an action plan that teaches people to safely and responsibly identify and address a potential mental illness or substance use disorder.

Understanding the risk factors for a mental health condition can be more difficult when it’s your own mental health. Take time to reflect on your thoughts, feelings, and behaviors to see if you see a pattern that may be caused by a mental health condition. Here are some questions to get you started:

• Have things that used to feel easy started feeling difficult?

• Does the idea of doing simple daily tasks now feel really, really hard?

• Have you lost interest in activities and hobbies you used to enjoy?

• Do you feel irritated, possibly to the point of lashing out at people you care about? 

• Have you withdrawn from family, friends, or society?

• Are you increasing your use of drugs or alcohol?

If you are concerned about your mental health, there are several options available. You are not alone — help is out there, and recovery is possible. It may be hard to talk about your concerns, but simply acknowledging to yourself that you’re struggling is a really big step.

Taking a screening at http://mhaw.org/get-involved/online-screening/ can help you to better understand what you are experiencing and get helpful resources. After that, consider talking to someone you trust about your results, and seek out a professional to find the support you need.  

A phone call to the Association for Mental Health and Wellness can help link you to support, services, workshops, and trainings. Call MHAW at 631-471-7242 ext. 2. While you may not need this information today, knowing the basics about mental health will mean you’re prepared if you ever need it.

Colleen Merlo, LMSW, is a  the Chief Executive Officer of the Association for Mental Health and Wellness in Ronkonkoma.

*This article first appeared in TBR News Media’s supplement Focus on Health on May 25, 2023.

Claudia Fortunato-Napolitano at her 'I Am Alive!' party.

By Stephanie Giunta

In honor of National Stroke Awareness Month, we would like to honor a local survivor, Claudia Fortunato-Napolitano, who is beyond inspirational. Here is her story.

On January 11, 2017, 34-year-old Huntington Village resident Claudia Fortunato-Napolitano, went to work like it was any other day, although she remembers having a bad headache. The passionate history buff and Executive Director at the Huntington Historical Society was making some personal calls during her lunch break. As she sat down to eat her lunch, she suddenly felt dizzy; her coworker asked if she was okay, and she couldn’t speak. Out of nowhere, a simple Wednesday became the day that forever-altered Napolitano’s future: the day she unexpectedly suffered a stroke. 

Once the stroke had occurred, Fortunato-Napolitano couldn’t remember what happened next, though she recounted her story by way of others at the scene. She was rushed to Huntington Hospital, and was then airlifted to North Shore University Hospital, where she resided for two weeks. When she woke up, she still couldn’t speak, had weakness in her right arm and couldn’t walk.

After a stint at the hospital, she was released into a rehab facility, but at the end of her week-long tenure, needed to move back into her parents’ house. Though the mobility in her arm was very low, she was slowly regaining the ability to walk, but couldn’t tackle the stairs up to her front door. She lived with her parents for three weeks, while simultaneously beginning outpatient rehab, seeing a handful of therapists to attempt to win her life back as her own through physical and cognitive recovery.

Claudia Fortunato-Napolitano at her ‘I Am Alive!’ party.

No warning signs 

Doctors were puzzled that a healthy 34-year-old, who had nothing more than a routine headache on the day of her stroke, could suffer something so unexpected and traumatic. At six months post-stroke, Fortunato-Napolitano began seeing a neurologist and underwent in-depth testing to reveal underlying notions of root cause.  She tested negative for everything doctors had assumed she would test positive for. Though they could confirm that the stroke was caused by a clogged blood vessel in her brain, the actual diagnosis remains inconclusive. 

A determined patient

After routinely attending speech therapy for six months, Fortunato-Napolitano still fought to talk. In our interview, she mentioned that she struggled with aphasia for the first two years during her recovery. Her therapist alluded to the fact that her speech would not improve — that she should simply get used to this new way of life. This led her down a dark path of depression, afraid that she would never regain her full ability to communicate with others. 

After 4-5 months, her parents encouraged her to seek a second opinion from another therapist who would work with her past the “6 month window.” As Fortunato-Napolitano stated during our interview, her mother “God bless her soul!” put her in touch with her current speech therapist, Judy Cavallo, who she still sees to this day. Cavallo even provides Fortunato-Napolitano with homework because she asks for it!

In addition to speech therapy, Fortunato-Napolitano continues to see an occupational therapist, Ian MacManus, to aid in her physical disabilities. Seven of her fingers work, but three fingers on her right hand are bent in a fixed manner. She dreams of the ability to wear high heels again, but walking is too difficult in any shoe aside from her signature Doc Martens and Birkenstocks — which she has in a wide variety of colors.  Her right foot cannot be fully-placed on the floor, and only the outside edge can go flat completely. 

To this day, Napolitano still goes to outpatient rehab twice per week (once to her speech therapist and once to her occupational therapist) to improve her skills and continually progress.

New realities 

Prior to the stroke, Fortunato-Napolitano was a writer. She wrote a historic Half Hollow Hills column for Patch Media on a weekly basis, as well as many articles for the Huntington Historical Society. Now, on average, it will take her about three hours to write three paragraphs. She mentioned that this has been the hardest thing for her to overcome from a professional perspective. But Siri is her best friend. She is so grateful for technology, which helps her text, post on social media, and write emails.  

Claudia Fortunato-Napolitano at her ‘I Am Alive!’ party.

A major milestone

Within the first five years of having a stroke, an individual is 50% more likely to suffer from a second stroke in comparison to a person of the same age. So, in January 2022, Fortunato-Napolitano threw herself an “I Am Alive!” party to celebrate meeting this critical milestone. There were over 85 people in attendance, including her neurologist and speech therapist, and she donned a stylish, sparkly green jumpsuit. Not only was this a celebration of how far she had come, but also that statistically, her chances of having another stroke or stroke-like episode would start to significantly decrease.  

Pivotal life lessons

Fortunato-Napolitano is so grateful to be alive. She could have been paralyzed and in a wheelchair; she may not have survived. But now, she makes sure that she lives every day to the fullest. She voluntarily chooses happiness.

Prior to the stroke, she was unhappy about stupid, inconsequential things. Now, Fortunato-Napolitano uses a “whatever!” mentality. She believes that life is worth living and she intends to make the most of the hand that she has been dealt. The biggest lesson she learned from her stroke, she mentioned, was, “I can be unhappy [about that] or I can just be happy. And I choose to be happy all of the time.” 

Fortunato-Napolitano fuels her happiness with her work. This February, she was newly-appointed as the Executive Director of the Greenlawn-Centerport Historical Association. She loves her job and the challenges it provides.

She is also a travel connoisseur — something she has been passionate about from a very young age. Her next destination includes heading to Cleveland on a baseball stadium tour for her husband’s birthday, but the top future spots on her international travel list include Africa, Argentina, Australia, and Turkey.

A message to all stroke survivors 

Fortunato-Napolitano’s hope is that someone in similar shoes reads this article, her story, and becomes happy due to reading it.  She can’t stress enough that you can and will get better — you just can’t stop believing in yourself. At six months post-stroke, her original speech therapist told her she would never speak again. Six years later, Fortunato-Napolitano is carrying on conversations beautifully. Each year, she sees subsequent progression and truly believes that she will continue to improve for the rest of her life.

There is a light at the end of the tunnel even during the darkest and most depressing of times. Her outlook on life has drastically changed from Year 2 to Year 6. She stressed the importance of self-dedication, while also surrounding yourself with a great support system.

Above all, Fortunato-Napolitano is a true inspiration.  She epitomizes optimism, and is dedicated, admirable, and determined. Her new dream is to become a life coach, as she hopes to help others through similar dark and unexpected times. She would love a platform in which to tell her story publicly. Fortunato-Napolitano is a happiness evangelist, a survivor to the nth degree, and only hopes she can inspire others, stroke conquerors or not, to live life to the fullest. 

Follow along with Claudia Fortunato-Napolitano’s journey on Instagram: @ayoungstrokerecovery.

This article first appeared in TBR News Media’s supplement Focus on Health on May 25, 2023.

Breast cancer myth busters

By Melissa Arnold

Each October, it seems like the whole world turns pink in the name of breast cancer awareness. From fundraisers to billboards, clothing and social media campaigns, that ubiquitous pink ribbon is everywhere. Of course, there’s a clear need for awareness, as 1 in 8 women on Long Island will develop invasive  breast cancer in their lifetime. But even with the October blitz, myths and misconceptions remain widely circulated among women of all ages.

Susan Samaroo is the executive director of The Maurer Foundation (www.maurerfoundation.org), a nonprofit organization in Melville established in 1995 with one goal in mind — to save lives through breast education. Their interactive workshops held in schools, colleges and community locations debunk long-held breast cancer myths, teach people how to lower their risk through lifestyle modification, and provide instruction to find breast cancer in its earliest stages when it is easiest to treat.

“We believe that it’s important to educate young people specifically and give them the information they need early on,” said Samaroo. “It’s never too early to learn what to look for and how to make positive changes that reduce breast cancer risk.”

The foundation educates roughly 20,000 people each year, the majority in co-ed settings. And Samaroo noted that they tend to hear the same rumors about breast cancer year after year. Let’s set the record straight on some of the most common myths.

MYTH: If you don’t have a family history, you won’t get breast cancer.

FACT: While family history is an important factor when considering potential risk, the National Institutes of Health reports that around 85 percent of people diagnosed with breast cancer do not have a family history.

For people that do have a family history, it’s critical to have a conversation with your doctor as soon as possible. Mammograms and other screening may be recommended as early as age 25, and in some cases, genetic testing is warranted. Having certain genetic mutations causes an individual’s risk to skyrocket, and preventative medication or surgery could be necessary.

MYTH: Only older women get breast cancer.

FACT: There are actually two false statements here. First, the age factor. According to Eileen Pillitteri, program manager of The Maurer Foundation, approximately 12,000 women in their 20s and 30s receive a breast cancer diagnosis each year.

Furthermore, men can and do get breast cancer. The Centers for Disease Control and Prevention (CDC) states that 1 in 100 breast cancers patients are men, making it critical for both men and women to familiarize themselves with the look and feel of their breasts and check regularly for lumps, discharge and changes in appearance.

MYTH: Size matters.

FACT: Some people believe that having larger breasts reflects a greater risk of cancer, but that doesn’t matter. It’s worth noting, however, that some women’s breasts are more difficult to screen for abnormal growths.

“An annual mammogram is the best overall screening test for breast cancer. There are some limitations, especially in women with dense breast tissue,” said Dr. Erna Busch-Devereaux, chief breast surgeon at Huntington Hospital, Northwell Health. “Having dense breasts means that there is not a lot of fatty tissue present in the breasts. These breasts are mostly glandular and the X-rays don’t penetrate that tissue as well, so the picture is not as clear. Finding cancer can be more difficult with dense breasts — it’s like finding a snowball (cancer) in a snowstorm (background breast tissue).”

Your doctor will let you know if you have dense breasts. Different types of screening, such as 3-D mammograms, ultrasound or MRI might be suggested for a clearer picture.

MYTH: Your deodorant or your bra could give you cancer.

FACT: As of right now, there is no scientifically-backed evidence showing an increase in breast cancer risk for women who use antiperspirants or deodorants, though there are “general concerns surrounding the impact of environmental and consumed chemicals on our health,” Busch-Devereaux said, adding that more study is needed.

And as for the rumor that wearing tight bras with underwire or any other type of bra can cause breast cancer by obstructing lymph flow? “That’s completely unfounded,” Pillitteri said.

MYTH: Lifestyle doesn’t change your cancer risk.

FACT:  Across the board, limiting or avoiding alcohol consumption and eating a well-rounded, nutritious diet can help lower your risk of many cancers.

When it comes to breast cancer specifically, other choices you make can make an impact as well, but the specifics can be complicated. 

“Having children at a young age and having multiple children results in a reduced breast cancer risk, but this protection is seen decades later. In the short term, there is an increased risk for breast cancer after having a child which is associated with pregnancy-related hormone surges,” Pillitteri explained.

Contraception is another tricky topic. Hormonal IUDs and oral birth control pills can increase breast cancer risk, but they can also greatly reduce the risk of ovarian and endometrial cancers, Pillitteri said.  Other health professionals, including Dr. Busch-Devereaux, said that birth control pills don’t appear to increase overall breast cancer risk.

Healthcare organizations agree that most types of hormone replacement therapy (HRT) to cope with symptoms of menopause does increase breast cancer risk.

The takeaway: “It’s important to talk to your doctor about the products that are right for you based on your individual risk factors,” Pillitteri said.

Be proactive

In the end, risk of breast cancer can vary from person to person based on genetics, body type and lifestyle. But it’s never too late to make positive changes.

“Eat a healthy, well-balanced diet, exercise, maintain an average weight, avoid smoking or vaping, and limit alcohol — things that are good for overall health are good for the breasts,” Busch-Devereaux said. 

Make sure you have an annual mammogram screening beginning at age 40. If you have a family history or genetic mutations, talk to your doctor about when to start screenings.

And don’t be embarrassed if it’s been a while since your last mammogram. The important thing is to go.

“Sometimes women are too worried to go for a mammogram, or they delay seeking care because they’re afraid,” Busch-Devereaux said. “We stand an excellent chance of curing cancer when it is found early, so mammograms are very important and should always be encouraged. Additionally, women shouldn’t feel afraid or embarrassed to come in for an evaluation if they feel a lump or notice a change in their breast and haven’t gone for a mammogram. We’re here to help.”

This article first appeared in TBR News Media’s Focus on Health supplement on Oct. 20, 2022.

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Animal overpopulation is a concern that affects the well-being of pets. The ASPCA says letting animals reproduce unchecked can lead to pet homelessness that results in millions of healthy cats and dogs being euthanized in the United States each year.

In addition to helping to control homelessness, spaying and neutering companion animals may have medical and behavioral benefits. As valuable as spaying and neutering can be, the procedures are not without potential complications. Responsible pet owners must weight the pros and cons of spaying and neutering with a qualified animal professional.

The ASPCA says it is generally considered safe for kittens as young as eight weeks old to be spayed or neutered. Doing so can help avoid the start of urine spraying and eliminate the chances for cats to go into heat and become pregnant. 

Did you know that female kittens can enter their first heat as young as four months? Or that most do so by the time they reach six months old? A domestic cat can live around 12 to 15 years. A cat that has an average of four kittens per litter, three times per year for 15 years can produce a total of 180 kittens over a lifetime. Spaying a cat early on can prevent overpopulation and offer other benefits. 

Spaying and neutering has been shown to reduce risk for testicular cancer and some prostate problems. Sterilization also can protect against uterine infections and breast tumors in many female pets. These procedures may also help prevent animals from roaming to find mates or reduce aggression problems.

Many veterinarians now recommend female and male dogs be spayed or neutered between the ages of six to nine months. Some vets say puppies can be neutered as young as eight weeks old as long as they are healthy. In fact, it has become the norm for rescue puppies to be neutered prior to being placed with adoptive families. Those who would like to follow the American Animal Hospital Association Canine Life Stage Guidelines should have small-breed dogs (under 45 pounds projected adult body weight) neutered or spayed at six months of age or prior to the first heat. Large-breed dogs should be sterilized after growth stops, which is usually between nine and 15 months of age. 

Some research has pointed out that early neutering may lead to certain medical conditions that may be preventable by waiting until a pup or kitten is a little older before having him or her go under the knife. Researchers at the University of California, Davis, conducted a study on golden retrievers in 2013 that found early neutering and spaying appeared to increase the risk of diseases, such as cranial cruciate ligament rupture, hemangiosarcoma, mast cell tumors, lymphosarcoma, and hip dysplasia.

Working with a veterinarian can help pet owners make informed decisions about the appropriate age for a pet’s sterilization.

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Nutrition is a popular topic of conversation, particularly among those embarking on a weight loss or maintenance plan. Individuals carefully study food macros and pore over various diets to get the most out of the foods they eat. When the end goal is simply looking good, it may be easy to forget about the other benefits of nutritious diets, including their link to overall health. 

A close relationship exists between nutritional status and health. Experts at Tufts Health Plan recognize that good nutrition can help reduce the risk of developing many diseases, including heart disease, stroke, diabetes, and some cancers. The notion of “you are what you eat” still rings true.

The World Health Organization indicates better nutrition means stronger immune systems, fewer illnesses and better overall health. However, according to the National Resource Center on Nutrition, Physical Activity, and Aging, one in four older Americans suffers from poor nutrition. And this situation is not exclusive to the elderly. A report examining the global burden of chronic disease published in The Lancet found poor diet contributed to 11 million deaths worldwide — roughly 22 percent of deaths among adults — and poor quality of life. 

Low intake of fruits and whole grains and high intake of sodium are the leading risk factors for illness in many countries. Common nutrition problems can arise when one favors convenience and routine over balanced meals that truly fuel the body. 

Improving nutrition

Guidelines regarding how many servings of each food group a person should have each day may vary slightly by country, but they share many similarities. The U.S. Department of Agriculture once followed a “food pyramid” guide, but has since switched to the MyPlate resource, which emphasizes how much of each food group should cover a standard 9-inch dinner plate. 

Food groups include fruits, vegetables, grains, proteins, and dairy. The USDA dietary guidelines were updated for its 2020-2025 guide. Recommendations vary based on age and activity levels, but a person eating 2,000 calories a day should eat 2 cups of whole fruits; 2 1⁄2 cups of colorful vegetables; 6 ounces of grains, with half of them being whole grains; 5 1⁄2 ounces of protein, with a focus on lean proteins; and 3 cups of low-fat dairy. 

People should limit their intake of sodium, added sugars and saturated fats. As a person ages he or she generally needs fewer calories because of less activity. Children may need more calories because they are still growing and tend to be very active.

Those who are interested in preventing illness and significantly reducing premature mortality from leading diseases should carefully evaluate the foods they eat, choosing well-balanced, low-fat, nutritionally dense options that keep saturated fat and sodium intake to a minimum.

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By Julie Freedman, M.D.

The shriek of the pager cut through my half-sleep. Willing myself to sit up on the plastic mattress, I pressed my thumbs along my eyebrows to clear a fleeting dream. It was 2:00 a.m. The emergency room had a new patient for me. She was 71 years old and recently diagnosed with amyotrophic lateral sclerosis, or ALS. She was having trouble breathing. After a near-lifetime of dutiful function, the neurons that moved her muscles had simply started to die. Even those muscles we never think about — her diaphragm or the ribbons that lifted her ribs to expand her lungs — had become unreliable. I switched on the fluorescent, call-room light and found my clogs.

Eleanor had a fever. The pneumonia on her X-ray looked like smudged chalk across both lower lungs. The ER physician had started BIPAP — Bilevel Positive Airway Pressure — strapping a cushioned plastic mask tightly over her face, forcing oxygenated air into her mouth. We call this “non-invasive” ventilation, but it is not comfortable. Her vital signs conjured a grim picture — heart racing, breathing fast — but the woman wearing the mask gave a different impression, despite the odd way the machine was ironing out her cheeks with each breath. She was calm. Her unstrained eyes were the chalky blue of flax blossoms. She was feeling better, she mouthed. Actually, she was hungry. Could she eat something?

Her husband, Bill, at her bedside, was calm too. He was tall and trim and moved with a youthful quickness. His neatly-tucked shirt made me suddenly aware of my own pajama-like hospital scrubs. Since Eleanor’s diagnosis, Bill explained, they had been managing everything at home. He was a retired electrician, so he was comfortable with all of the medical equipment. They even had a BIPAP unit there for nighttime. 

They had been living close to this edge for some time. It had become normal for her to strap on a mask to breathe. Bill said they wanted to return home as soon as possible. He could handle everything, he assured me, seeming a little irritated by my hovering at Eleanor’s bedside. They had no illusions, he explained, deftly untangling the tangle of wires lying across his wife’s chest. They knew her disease was progressive, and fatal, but they still had things under control. 

She was still gardening, he said, with an edge of pride. He showed me a picture of sunlight, caught in the bowls of tulips. Not that life wasn’t messy. It had been messy even before the day Eleanor admitted to him that she could not get her fingers to button her blouse. Bill’s retirement money never quite stretched enough. There were grandchildren to scramble after three days a week. They were sweet kids, but Bill didn’t have the patience. Eleanor did, though. She gave me a stretched-out smile from behind the mask. She was hungry, he reminded me. Was there a sandwich somewhere she could have?

I wasn’t reassured. Her heart was working like she was running up stairs, just to lie still. A patient with weak respiratory muscles and pneumonia in both lungs might soon need the more “invasive” kind of breathing support, a mechanical ventilator. A ventilator blows air into a patient’s lungs through a tube we insert directly into her trachea. Bill and Eleanor hoped to avoid a ventilator, but she would accept it if necessary, at least for a time. To use a ventilator, we would need to sedate and paralyze her, which meant that Eleanor’s stomach should stay empty. So, no sandwich for now.

Over the next two hours, I sat at the ICU nurses’ station across from Eleanor’s room, propped awake by a familiar anxiety, the prickly weight of my own hesitation. If Eleanor’s breathing muscles tired out before the antibiotics took hold, she could quickly worsen. Not intubating her early might endanger her, but it is my nature as a doctor to try to avoid aggressive interventions. I tend to see their burdens in the foreground. 

When we intubate someone, we affect a strange transformation. The patient becomes a chimera, part woman and part machine. We lose the expression in her face. The ventilator’s vocabulary of alarms replaces her voice. Her family’s eyes track the cardiac monitor. They touch her skin without knowing if she can feel it. We lose all of the small, animal ways we read each other. A mechanical ventilator can save a life, but when a patient dies despite using one, I struggle to accept what we have done. I was not impartial here. I wanted to get Eleanor back to her tulips and their brief season, but I really did not want to intubate her. So I watched, tracking the cursive of Eleanor’s heart rhythm on the monitor. Eventually, she closed her eyes, her breathing more even, and I returned to my plastic mattress to sleep too.

In the morning, Eleanor smiled brightly when I walked in the room, the only plastic on her face the slender oxygen tubing. Could she finally have breakfast? I was grateful, not sure she grasped the fate she had outrun. Yes to breakfast. Yes, she could. She returned home the following day.

Three months later, Eleanor was back in the hospital with another pneumonia. This one was milder, just some stray sketch lines on her X-ray. At home, she could walk only a few steps now. A truck brought steel oxygen tanks to their house each week. Bill had been half-lifting her, wrapping her arm across his shoulders, to pivot to a portable toilet at her bedside. He had learned some simple cooking because she could no longer manage that, and was getting pretty good at roast chicken. Despite his efforts, Eleanor had lost weight. The space between the bones of her forearm was a furrow under my fingers. Each day though, she spent time in their garden. There was a shady spot for her wheelchair.

Eleanor did not seem to defy her medical numbers this time. She looked weary as her heart jogged along. Her thin shoulders kept slumping leftward despite the pillows that the nurses had tucked around her. I was at her bedside on her third hospital day when she took a sip of water and started to choke. 

She coughed again and again, a flash of the pale blue of her eyes each time, then finally recovered. She began to cry. “I’m sorry. I’m sorry,” she said. 

She shouldn’t be like this, she explained. Anger ridged her quiet voice. She was supposed to make cookies with her smallest granddaughter. The girl was four. What would she remember? This being lifted to the toilet, this fragility, it did not suit her. She was a mother and a grandmother. She stirred thick dough and weeded and bound her family together. Except that now, she did not. I had focused on her vital signs. I was missing her suffering. I sat and held her papery hand and told her that none of this was her fault. 

The next day, Eleanor was stable enough to return home. Busy with other patients, I sped by her room for a quick hug, taking in the sharp ridge of her shoulder against my chest.

Two months later, she returned. At home, she was in bed all the time. Her neurologist had actually sent two hospice nurses to the house a few weeks before. They set up an array of syringes and tablets in the dining room. Bill sent them away again after only two days. He didn’t like how they did things. Those nurses had brought morphine. They had started to teach Bill to administer it. That had scared them both. “We don’t believe in morphine,” Bill told me. Eleanor, watery-eyed behind her oxygen mask, nodded agreement. She pointed to a spiral-bound notebook and I handed it to her. In shaky letters, all capital, she wrote, “I WANT CONTROL.” 

It’s not often that patients tell me that they “don’t believe” in a medication, but morphine can spark intense reactions. I fell silent, trying to resolve what it was they did not believe in. Eleanor’s thin legs barely rippled the hospital blankets. Breathing itself was work. Both she and Bill knew she was dying. What did “control” mean for her now? 

The pharmacology of morphine is complex. It is an essential medicine at the end of life. It relieves pain, and, because there are opiate receptors in the lungs, also soothes the drowning feeling that comes with end-stage respiratory illness. I remembered Eleanor choking on that thread of water. If she felt that again, morphine would help. But it is an imprecise drug. It causes sedation as it relieves physical suffering. Was this the loss of control she feared? It can also cause euphoria, restlessness, hallucinations, and, at high doses, death. My training taught me to show it due respect: start with low doses, lower still for someone frail, then assess for effect. 

Medical ethics teaches that intention matters. If I give a reasonable dose of morphine with the intention to relieve suffering, and I cause an unwanted outcome ­— sedation or agitation, or even death — I am still keeping my oath not to harm. This is the “doctrine of double effect,” derived from the teachings of 13th-century Catholic theologian Thomas Aquinas. It offers a clear enough theory, but it never really sets me at ease. If I give a drug and a bad thing happens, my patients and their families experience that bad thing. I have hurt them, and Aquinas does not offer much comfort. 

To be clear, morphine relieves suffering almost all of the time. Patients usually welcome that relief, but I’ve also spoken with grieving family members who look back on someone’s death from a long, terrible illness, convinced that morphine was the thing that killed her. These conversations play in my mind when I care for a dying patient in the hospital. I am aware of the family’s eyes on my hands, of how my words might replay in their heads, that they will relive my patient’s last moments again and again. In this sense, the family becomes my patient too. 

Eleanor’s words on that notebook page were wildly impossible: she did not have control. They seemed like a request for relief that I was not trained to give, spiritual or existential. Eleanor and Bill had faced her illness by asserting control in the face of the uncontrollable. They voiced acceptance, but they were defiant. All along, they had been letting out rope, in stepwise retreat, giving up the gardening, the cooking, the not needing help. With each retreat, they had established another defensive position, and now she was staked out at just remaining awake. Eleanor’s cardiac monitor alarmed in shrill tones as her heartbeat became briefly irregular, then quieted. I dropped the subject of morphine for the moment. I could not find words to resolve Eleanor’s desire for control with how near she was to death. I didn’t want to push anything on them that they might later look back on as a violation. 

A few hours later, Eleanor was struggling. There was sweat on the sides of her nose. I tentatively asked her if she would accept some morphine to help ease her breathing. She nodded. I ordered a small dose, and returned to the room with the nurse while she gave it. I talked with Bill and with Laura, their daughter, consciously modeling a sense of calm routine. The drug helped. Eleanor’s face relaxed. She even gave a hint of a smile.

That evening, Eleanor was mostly peaceful. When she did become uncomfortable, she received more morphine, and was able to rest. The next morning, Bill asked me about bringing her home. She wanted to see her garden. He wanted her there too.

As we talked, Eleanor began to cough, nearly silently. Her shoulders jerked. She lurched her hand clumsily for Bill’s wrist. Her nurse gave morphine. Ten minutes later, she was still breathing fast, grunting, heavy eyelids startling open with each cough. Bill sat down, then stood again, then sat. He reached to adjust her monitor wire, her oxygen cannula, then stopped, suddenly unsure of where to put his hands. Laura reached for Eleanor’s shoulder. I asked her nurse for another dose of morphine. A few minutes passed. Eleanor’s breathing quieted and she leaned her face into a pillow. Bill let out a long breath, then turned to me. He began to ask about the logistics of ambulance transportation home. 

Suddenly, Laura nudged her father. Eleanor’s eyes had closed, and her breathing pattern had changed. With each inhalation, she lifted her chin up and forward, like a swimmer reaching for the surface of the water. Bill called her name. She didn’t answer. Suddenly, she was gone from in front of us. Bill looked at me, eyes flashing something that might have been anger. My own heart pounded. I knew the morphine doses had been appropriate. Still, I worried he might hold me accountable if these were her final moments. Willing myself calm, I encouraged them to stand close to her, to hold her hands and touch her hair and talk to her. After a few minutes, I left them alone.

An hour passed. I crept back to her room, but hesitated before parting the polyester curtain. My patients are usually strangers to me, but Eleanor was not. It was an accidental gift of my call schedule that had let me care for her through her three hospitalizations, to watch over her and her family, even in this interrupted way. I was afraid I had failed them anyway. Gathering a breath, I went in. More family members had arrived, seven in all. At the center of this crowd, awake and laughing, was Eleanor. She had spent fifteen minutes beyond the reach of their voices, and then woke up to find them staring at her. She had jokingly asked for lipstick so she could face the occasion more glamorously. They were almost giddy with relief. But relief for what? Relief that she had not died, certainly, but she would soon and they all knew it. They now knew what her death could be like. They had had their dress rehearsal, and, in the extinction of that mystery, it was like they no longer feared it. Suddenly, they had these minutes, and maybe hours or even days, and each one was a gift.

Eleanor was too fragile to send home. Laura and Bill would instead stay with her overnight. She struggled briefly that evening, but by sunrise, she was mostly dozing. A few hours later, her breathing slowed. Again, she reached her chin upward for air. Again, she was beyond the reach of her family’s voices. I counted to 20 after one breath ended before the next one came. And then, none came. Bill wept. “My girl,” he said, taking her hand.

Julie Freedman is a hospitalist and palliative care physician at a community hospital in the San Francisco Bay Area. She received her medical degree from Harvard University and trained in internal medicine at the University of California, San Francisco. She believes that we need narrative almost as we need shelter: We build stories around ourselves in the face of serious illness. Understanding, and sometimes entering, these stories is an essential part of caring for patients. On the other hand, after this last year, she is thinking it might also be lovely to become a florist. She is on Twitter @jfreedmanmd

* This article was first published in the Spring 2021 Intima: A Journal of Narrative Medicine (theintima.org) and is reprinted with permission.

 

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By Melissa Arnold

Just about everyone knows the throbbing discomfort of a headache, whether it comes after a long day of work, too little sleep or an oncoming cold. It’s also likely that you’ve heard someone say they have a migraine when the pain becomes severe.

But the truth is that migraine is more than just a bad headache, and the term has taken on a variety of meanings, not all of them accurate.

According to the American Migraine Foundation, migraine is an incurable brain disease that affects approximately 40 million people in the United States — that’s 1 in 4 households. In the majority of those cases, at least one close relative has migraines as well, but it’s still uncertain what causes the disease. 

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Migraine can come with a wide range of neurological symptoms that differ from person to person and day to day. These symptoms exist on a spectrum from sporadic to chronic, mild to incapacitating, and some people can even experience trouble speaking, weakness and numbness in ways that mimic a stroke.

“Migraine is more than just pain. While the pain is often moderate to severe, one sided and throbbing, there are other characteristics,” said headache specialist Dr. Noah Rosen, director of the Northwell Headache Center in Great Neck. 

“The individual must also have either sensitivity to light and noise or nausea to meet the full definition. This can worsen with movement, and many people also develop associated skin or hair sensitivity. Many people may also experience changes in mood, energy level and appetite. About 20% of migraine patients may also have aura with their migraines, which is a brief, fully reversible neurological deficit. Auras can cause visual changes, sensation changes and sometimes weakness.”

For Cat Charrett-Dykes, migraines have been a regular part of her life since she was 13 years old. She would see sparkles and spots and go through bouts of nausea and vomiting, all while feeling like a knife was stabbing through her head. At school, she had trouble reading and finding the right words. “I felt like Dorothy in ‘The Wizard of Oz.’ Some of my siblings also had migraine occasionally, but not to the same degree,” said Charrett-Dykes, who lives in Holtsville. 

The attacks were relatively easy to tame until after the birth of her first child. Then, as is common, her migraines became more severe and frequent. She saw countless healthcare providers, who couldn’t agree on a diagnosis: They suggested she had anxiety, allergies, epilepsy. One even asked if her ponytail was too tight.

Unfortunately, getting a proper diagnosis and care can be a problem in the migraine community. The World Health Organization reports that more than half of all people with migraine haven’t seen a doctor for their condition in at least a year. Many more have never been formally diagnosed. While seeing a neurologist can be useful, not all neurologists are experts in headache disorders.

“Only about 700 people in the country are certified headache specialists, and the field of headache medicine is not yet formally recognized by the federal government, so there are limits on the field’s growth despite how common the condition is,” Rosen explained. “During my time as a resident physician I was seeing severely disabled patients with headache disorders end up in the emergency room, yet I had almost no education in that area, in part because of how underserved the condition is. It is often ignored, stigmatized and mistreated.”

Charrett-Dykes waited decades to find someone who understood her. 

“It wasn’t until 2003 that I was finally diagnosed. As soon as the physician’s assistant walked into the room, he took one look at me and turned off the lights,” she recalled. “No one had ever done that before. He said, ‘You have migraines, don’t you? I know that face. My wife has migraines, too.’ It was such a relief.”

Still, a diagnosis is only the beginning of the migraine journey. Treatment is focused on identifying the person’s unique triggers — perhaps certain foods, scents, strenuous activity, or an irregular schedule — along with the precise combination of medications and other options to help ease their symptoms. There is no magic bullet, and finding treatment that helps can be challenging. 

“Trigger identification and avoidance is a great thing to try, but not always possible.  Raising the ‘threshold’ required to set off a migraine can be done with pharmacological or non-pharmacological approaches,” Rosen said. “Of the medications that are available now, some are preventive and some are acute (or abortive). The preventive treatments help avoid getting the headache in the first place. Healthy habits like regulating sleep, diet, hydration and stress can reduce frequency, as can some vitamin supplements, complementary practices like acupuncture, biofeedback, mindfulness and regular cardiovascular exercise.”  

Nancy Harris Bonk

The process of trial and error is exhausting for many people with migraine, including Nancy Harris-Bonk of Albany, who’s tried countless doctors and medications since her first migraine attack as a young teen. At one point, she was taking the highest dose of oxycodone allowed under a doctor’s care and still having 25 or more migraine days each month.

“I just wasn’t recovering, so I went online and started looking for answers,” said Bonk, whose episodic migraines turned chronic after a fall left her with a traumatic brain injury. “I was able to make contact with someone else who had migraine attacks, and it opened a door for me. I learned that I wasn’t alone and that there were treatment options. It made me want to help educate others about migraine disease and how to live with it.”

Downstate, Charrett-Dykes had similar goals. She founded Chronic Migraine Awareness, Inc. (CMA) in 2009, a simple chat group that later grew into a multifaceted nonprofit connecting people with resources, specialists, and one another. CMA’s main Facebook group now has 12,000 members around the world, with several smaller groups for specific demographics and topics. They also provide care packages for people with migraine, support caregivers, and lead advocacy efforts.

Bonk eventually qualified for Social Security Disability Insurance, freeing her up to focus on her well-being while acting as a resource for others. She still has about 15 migraine days a month, but medication changes and a knowledgeable healthcare team have made life a lot more manageable, she said. She serves on the board of CMA and works with the National Headache Foundation’s Patient Leadership Council; the Coalition for Headache and Migraine Patients (CHAMP); and Migraine.com.

“Learning all you can about migraine disease, knowing what it is and what it isn’t, can make a big difference when it comes to seeking care and advocating for yourself,” Bonk said. “Forming connections with others who have similar experiences is important so we know we’re not alone. This disease can leave us feeling isolated, frustrated and overwhelmed … talking with others who are going through a similar journey is validating and a great comfort. ”

While each of these organizations has a unique focus, they all share a desire to increase knowledge and awareness of migraine disease.

“The pain of migraine is not like other pain and should not be treated like that. It needs to be discussed and not just treated,” Rosen said. “The stigma of people with migraine having a low pain tolerance is also nonsense. I have been impressed on a daily basis by the strength, resilience and resourcefulness of these patients.”

June is Migraine and Headache Awareness Month. To learn more, visit www.migraine.com. To connect with others, visit CMA’s website at www.chronicmigraineawareness.org. The Northwell Headache Center has several locations on Long Island and telehealth appointments are available. For information, call 516-325-7000 or visit www.northwell.edu/neurosciences/our-centers/headache-center.

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To take care of your heart, it’s important to know and track your blood pressure. Millions of Americans have high blood pressure, also called hypertension, but many don’t realize it or aren’t keeping it at a healthy level. 

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For most adults, healthy blood pressure is 120/80 millimeters of mercury or less. Blood pressure consistently above 130/80 millimeters of mercury increases your risk for heart disease, kidney disease, eye damage, dementia and stroke. Your doctor might recommend lowering your blood pressure if it’s between 120/80 and 130/80 and you have other risk factors for heart or blood vessel disease.

High blood pressure is often “silent,” meaning it doesn’t usually cause symptoms but can damage your body, especially your heart over time. Having poor heart health also increases the risk of severe illness from COVID-19. While you can’t control everything that increases your risk for high blood pressure – it runs in families, often increases with age and varies by race and ethnicity – there are things you can do. Consider these tips from experts with the National Heart, Lung, and Blood Institute’s (NHLBI) The Heart Truth program: 

#1: KNOW YOUR NUMBERS

Everyone ages 3 and older should get their blood pressure checked by a health care provider at least once a year. Expert advice: 30 minutes before your test, don’t exercise, drink caffeine or smoke cigarettes. Right before, go to the bathroom. During the test, rest your arm on a table at the level of your heart and put your feet flat on the floor. Relax and don’t talk.

#2: EAT HEALTHY

Follow a heart-healthy eating plan, such as NHLBI’s Dietary Approaches to Stop Hypertension (DASH). For example, use herbs for flavor instead of salt and add one fruit or vegetable to every meal.

#3: MOVE MORE

Get at least 2 1/2 hours of physical activity each week to help lower and control blood pressure. To ensure you’re reducing your sitting throughout the day and getting active, try breaking your activity up. Do 10 minutes of exercise, three times a day or one 30-minute session on five separate days each week. Any amount of physical activity is better than none and all activity counts.

#4: HAVE A HEALTHY PREGNANCY

High blood pressure during pregnancy can harm the mother and baby. It also increases a woman’s risk of having high blood pressure later in life. Talk to your health care provider about high blood pressure. Ask if your blood pressure is normal and track it during and after pregnancy. If you’re planning to become pregnant, start monitoring it now.

#5: MANAGE STRESS

Stress can increase your blood pressure and make your body store more fat. Reduce stress with meditation, relaxing activities or support from a counselor or online group. 

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#6: STOP SMOKING 

The chemicals in tobacco smoke can harm your heart and blood vessels. Seek out resources, such as smoke free hotlines and text message programs,  that offer free support and information.

#7: AIM FOR A HEALTHY WEIGHT

If you’re overweight, losing just 3-5% of your weight can improve blood pressure. If you weigh 200 pounds, that’s a loss of 6 to 10 pounds. To lose weight, ask a friend or family member for help or to join a weight loss program with you. Social support can help keep you motivated.

#8: WORK WITH YOUR DOCTOR

Get help setting your target blood pressure. Write down your numbers every time you get your blood pressure checked. Ask if you should monitor your blood pressure from home. Take all prescribed medications as directed and keep up your healthy lifestyle. If seeing a doctor worries you, ask to have your blood pressure taken more than once during a visit to get an accurate reading. 

To find more information about high blood pressure as well as resources for tracking your numbers, visit nhlbi.nih.gov/hypertension.

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You’re not alone and help is available

By Jeffrey L. Reynolds

Jeffrey L. Reynolds

As COVID hit and stay-at-home orders began, alcohol sales and consumption skyrocketed.  Nielsen reported a 54% increase in national sales of alcohol for the week ending March 21, 2020, compared with the year prior; online sales increased 262% from 2019. In several national surveys, more than half of adult respondents said that they were drinking more frequently — often daily — and many said that they were having more drinks at each sitting, with about a third engaging in potentially dangerous binge drinking. 

The jump in alcohol use was largest among women and not surprisingly, people of all ages cited increased stress, anxiety and grief coupled with increased alcohol availability and boredom as contributing factors.  

As the world returns to “normal” and day drinking memes on social media begin to fade, some of those who have become accustomed to a 3 p.m. drink or who have increased the number of glasses of wine or beer they consume with dinner will have a hard time going back.  

How do you know if you’re drinking too much? 

According to the federal government’s Dietary Guidelines for Americans, moderate alcohol consumption is defined as having up to one drink per day for women and up to two drinks per day for men. This definition refers to the amount consumed on any single day and is not intended as an average over several days. The Dietary Guidelines, however, also say that people who don’t usually drink alcohol shouldn’t take that as a green light to start.

The Dietary Guidelines define a one alcoholic drink equivalent as containing 14 g (0.6 fl oz) of pure alcohol, which includes 12 fluid ounces of regular beer (5% alcohol), 5 fluid ounces of wine (12% alcohol), or 1.5 fluid ounces of 80 proof distilled spirits (40% alcohol).

In comparison to moderate alcohol consumption, high-risk drinking is the consumption of four or more drinks on any day or eight or more drinks per week for women and five or more drinks on any day or 15 or more drinks per week for men. Binge drinking is the consumption within about two hours of four or more drinks for women and five or more drinks for men.

Excessive alcohol consumption, which includes binge drinking, high-risk drinking, and any drinking by pregnant women or those under 21 years of age comes with significant risks. Excessive drinking increases the risk of many chronic diseases and violence and, over time, can impair short- and long-term cognitive function. Binge drinking is associated with a wide range of health and social problems, including sexually transmitted diseases, unintended pregnancy, accidental injuries, and violent crime.

As scary as all that can be, there’s a ton of help available both in our local communities and online, where trained professionals can help you assess your drinking and if need be, help you come up with strategies to cut-back or quit. At FCA, we operate two state licensed outpatient treatment centers, two recovery centers and recovery coaching (Call 516-746-0350 or visit FCALI.org). LICADD runs a 24-hour assessment and referral hotline at 631-979-1700 as does Response at 631-751-7500 and Project Hope at 1-844-863-9314.

There are also a number of free or low-cost addiction recovery smartphone apps that give consumers 24/7 access to self-help and tracking tools, 12-step programs, motivational tools, and reminders. Sober Grid, SoberTool, Nomo, WEconnect, rTribe, and 24 Hours a Day are just a few of the popular resources. Alcoholics Anonymous and other 12-step programs have meetings online, along with a host of other online sobriety support groups. Of these, Self-Management and Recovery Training (SMART), Loosid, LifeRing, Club Soda, Women for Sobriety, and Tempest are among the top-rated. 

Emerging from COVID and returning to normal is going to look different for everyone. If it’s proving to be challenging for you or someone you love, pick up the phone, fire up your computer and reach out for help today. You are not alone.

Dr. Reynolds is the President/CEO of Family and Children’s Association (FCA), one of Long Island’s oldest and largest nonprofits providing addiction prevention, treatment and recovery services. 

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The Centers for Disease Control and Prevention has recommended that people wear cloth face coverings in public settings where social distancing measures are difficult to maintain. Even as the world begins to unpause, wearing masks seems likely to continue.

Masks are designed not to prevent the wearer from getting ill, but to protect other people from getting the virus. Masks protect others from your germs when you cough or sneeze. They’re also an effective way to help people to avoid touching their faces.

Masks are exposed to the elements and germs each time they are worn, meaning they will require cleaning. Even though Harvard Health suggests COVID-19 may live more readily on hard surfaces than fabric, the CDC urges people to give cloth face masks the same level of care as regular laundry. Masks should be washed and dried often. The CDC offers these tips on how to clean most cloth and fabric masks.

• Fabric face masks should be washed depending on the frequency of use. More frequent use necessitates more frequent washing.

• A washing machine should be adequate for properly washing a face covering. Choose a warm setting for water temperature. Place masks in the dryer afterward.

• More delicate, hand-sewn masks may be washed by hand, suggests The Good Housekeeping Institute Cleaning Lab. Lather masks with soap and scrub them for at least 20 seconds with warm or hot water before placing in the dryer.

• For additional sanitation, iron masks on the cotton or linen setting for a few minutes to kill remaining germs.

• If masks are fortified with a filter, such as a coffee or HVAC filter, keep in mind that these filters are designed for single use. Paper filters should be replaced after each use. HVAC filters are washable, but manufacturers warn that their effectiveness decreases with each wash. Medium weight nonwoven interface used as filter material is typically washable.

Various health agencies do not condone using steam or microwaves to clean cloth face masks, as these sanitizing techniques are not as effective as regular laundering. Also, never microwave non-fabric dust or N95 respirator masks if you are using them. They can catch fire or be rendered useless.