Tagged Disabilities

Readers And Tweeters: No Rush To Judge Patients Who Leave The ER Without OK

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


At The ER, It’s Hurry Up And Wait

At least the patients mentioned in “As ER Wait Times Grow, More Patients Leave Against Medical Advice” (May 17) were allowed to leave. An emergency room may not be a safe place for people and they may wish to go. It is not always the patient who is being irresponsible; it is sometimes those who work in the hospital.

My significant other and I ended up in a situation at the University of New Mexico Hospital. We were there for an appointment with a doctor associated with the hospital, but while she was getting checked in, she fainted. She was out for a short time. They sent over a paramedic to take her to the ER. She did not wish to go to the ER but was not immediately able to get up and leave, even by wheelchair.

The paramedic and his assistant took elaborate measures to separate me from my significant other, for whom I am a caregiver, and they interrogated her. It seemed they wanted her to admit to drug usage. She was very frightened. Eventually, I was allowed to enter the ER, and when the paramedic saw me, he scattered like a roach.

Five hours is a long time to wait. That makes no sense. If people have to wait for five hours it means you really do not have enough staff to handle them all. In most cases, an ER is useless, anyway. They work for people who suffer a car accident, gunshot wound, broken leg or heart attack. For other things, they generally are not much help and often do not even have essential services manned, like ultrasound, MRI, etc. So, in most cases, it is basically a waste of time.

Look inward to figure out why people bolt.

— Sigmund Silber, Santa Fe, N.M.


— Dr. Ali Khan, Omaha, Neb.


There is a lot of discussion over the cost of health care, but people don’t realize how inefficient our system is. I have an 18-year-old son who was born with spina bifida and has had many other health issues. In mid-May, he had a pain in the left side of his back. Not common, and he does not complain about pain. The nurse at his school was concerned; my son looked pale, he came to her wanting to lie down — not typical. So I called his urologist’s office asking how to recognize kidney stones, which he has never experienced. The front desk personnel told me to take him to the ER.

We traveled almost an hour to Children’s Healthcare of Atlanta at Scottish Rite, where he has specialty docs. After running many tests, they told us he had a stomach virus, and we were sent home. On May 30, my son got his annual renal bladder ultrasound done in preparation for a mid-June spina bifida clinic appointment. Turns out, he had a kidney stone! It showed up on the ultrasound.

I am extremely frustrated since it is not the first time I have been told to take my son to ER only to be told “nothing is wrong” or “we can’t help him” even though there later proved to be a problem. What a BIG waste of time and money on our health care system. But you can’t get in to see doctors when you have a problem, so you almost always have to go to the ER. In my opinion, that is a waste of ER services, which I do not hear talked about in the news.

— Rebecca Joiner, Fayetteville, Ga.


— Michael Bertaut, Baton Rouge, La.


Give Midwives And Birth Centers A Chance

In your “Bill of the Month” piece about laughing gas, “Not Funny: Midwife Slapped With $4,836 Bill For Laughing Gas During Her Labor” (May 29), I wish your recommendations would have included seeking out birth centers as an alternative to hospital births. Given the embarrassing state of maternity care in the United States, it’s time to focus on the advantages of midwives and birth centers. They have proven statistically better outcomes at half the cost. As a former consultant to the American Association of Birth Centers, I was impressed when I learned that the AABC built a registry of data to track, measure and improve quality over 13 years ago. They recognized the need for a separate credentialing association, the Commission for Accreditation of Birth Centers, or CABC, and supported the development of its standards. Women need an alternative to our current standard options for low-risk maternity care.

— Linda Davis, Minneapolis


Editor’s note: This is a teachable moment. The following tweeter might have confused Kaiser Health News for Kaiser Permanente. KHN, the health care policy news source you’re currently reading, is not affiliated with the managed-care consortium, although both were named for innovative American industrialist Henry J. Kaiser. Any confusion shouldn’t diminish the strength of her argument, however.

— Allie Keeley, Richmond, Va.


— Dr. Tom Pink, Geneva, Switzerland


In fact, there are positive developments in prenatal care. Several readers weighed in on our article about what to expect when you go through pregnancy with a group of other expectant parents.

— Lauren Lee White, Los Angeles


At The Center Of Group Maternity Care

It was great to see your story on the centering model of maternity care (“The Unexpected Perk Of My Group Pregnancy Care: New Friends,” May 30), but how about some credit to Sharon Rising, the nurse who founded, tested and promotes this health-expanding approach? Nurses are rarely credited. She is an astonishing clinician-scientist who deserves being named in such stories. Thank you.

— Debbie Ward, Sacramento, Calif.


A tweeter in Portugal called her role in a group prenatal program a career highlight:

— Justine Strand de Oliveira, Algarve, Portugal


Missing Tool In The Toolbox For Treating PTSD

I was grateful to see the recent story by Caroline Covington about treatment for PTSD (“For Civilians, Finding A Therapist Skilled In PTSD Treatments Is A Tough Task,” May 22). Unfortunately, she missed a huge piece of the puzzle. A therapy called Eye Movement Desensitization and Reprocessing (EMDR) is an evidence-based treatment for post-traumatic stress disorder, having been validated by more than 36 randomized controlled studies. Endorsed by the American Psychological Association, the Substance Abuse and Mental Health Services Administration, and the Departments of Defense and Veterans Affairs, it is used throughout the world to heal PTSD efficiently. It was developed in 1987 by Francine Shapiro. Please check out EMDRIA.org for research documentation. As a licensed psychotherapist and certified EMDR therapist, I have witnessed the dramatic healing effect of EMDR with my clients suffering from PTSD for many years. I appeal to Ms. Covington to look into this area and complete the story.

—Stephen Weathersbee, a licensed marriage and family therapist, Tyler, Texas


— Harry Stark, Woodland Hills, Calif.


As a short-term veteran (1988-90) diagnosed in 2016 with complex post-traumatic stress disorder, I wanted to add a couple of thoughts. As much as my story was influenced by having been in the military, I constantly found myself comparing my experiences with other veterans. I was always giving deference to the fact that my story wasn’t theirs, and that theirs was usually far more of a “good excuse” to have the condition. In treatment, that logic extended to my individual circumstances. I was constantly comparing my experiences, minimizing at every turn.

I’ve been through both Prolonged Exposure (PE) and Cognitive Processing Therapy (CPT), about two years apart; the PE was used more recently and, in my opinion, was more effective. I wanted to mention another therapy your missed, though: Eye Movement Desensitization and Reprocessing (EMDR). I am on a waiting list with Virginia’s Salem VA Medical Center to try this cutting-edge, light-based therapeutic tool. I even wrote to Samsung and Oculus corporations to suggest they work on making EMDR programs for their VR headsets, in conjunction with VA clinicians.

As you suggested in the article, the industry is catching up to both new methodologies as well as a new client base for PTSD that includes the civilian community. The influx of money and research capacity that comes with this new client base could be well used in advancing this method, and/or combining it for use with current methods.

I know your article concentrated on PTSD experienced by civilians and overcoming the stigma that this disease is somehow reserved for veterans. People need to understand that because we’re all different in our brains that this condition is never the same exact thing … even in two veterans who served side by side. Sure, someone always has it worse than you, but that doesn’t mean your symptoms don’t deserve help.

— Neil Marsh, Moneta, Va.


Spreading The Word (Correctly) About Measles

The United States did not declare measles “eradicated” (“How Measles Detectives Work To Contain An Outbreak,” June 10). It declared the disease “eliminated.” Big difference. In medical terms, “eradicated” means gone forever, as in smallpox. “Eliminated” means no sustained transmission over the period of a year.

— Linda Hultman, Louisville, Colo.

Editor’s note: Another teachable moment. We stand corrected. Thank you!


Dignity At The End Of Life

Something useful to add to Jenny Gold’s article “Will Ties To A Catholic Hospital System Tie Doctors’ Hands?” (April 29): I believe Catholic hospitals ignore patients’ end-of-life wishes. No advance medical directives. So, if I want a do-not-resuscitate (DNR) order, they can override that and insist I live my final days in agony or zoned out.

I always learn something in your newsletters. Keep up your good work!

— Gail Jackson, Waikoloa, Hawaii


Readers everywhere rejoiced over good news, for a change.

— Oral Hazell, St. Thomas, U.S. Virgin Islands


Good Work Restoring Faith In Humanity

The article “Churches Wipe Out Millions In Medical Debt For Others” (June 3) was one of the most uplifting and inspirational stories I have read in such a long time. Kudos to the author and your publication. This is a creative solution that not only stretches donation dollars but sets an example that other religious organizations could easily follow. Thank you.

Philip Heigl, New Cumberland, Pa.


— Chase McGee, Durham, N.C.


— Don Purser, Marietta, Ga.


Helping Those With Developmental Disabilities Navigate Health Care

I have a 17-year-old son with cerebral palsy, so the article “For Those With Developmental Disabilities, Dental Needs Are Great, Good Care Elusive” (May 3) hits home. I would like to see more stories that shed light on the challenges of navigating the health care system for individuals with developmental disabilities. Along with a small share of the U.S. population, my son receives long-term services and supports (LTSS) through Arizona’s Medicaid program. According to a report from Truven Health Analytics, “The Growth of Managed Care Long-Term Services and Supports Program: 2017 Update,” approximately 1.78 million individuals are enrolled in the MLTSS program. Our health care system should do a better job easing the burden in navigating the system for this vulnerable population. I hope that by bringing more attention to these issues will result in policy changes.

— Son Yong Pak, Tempe, Ariz.


In response to the article by David Tuller on dental care for the disabled: I wanted him to know that Special Olympics Virginia provides free dental care (including treatment and procedures) for hundreds of special needs athletes at their Summer Games. Dozens of dentists donate their time for this free clinic. Special Olympics Virginia is able to do this with the support from the Virginia Dental Foundation, Virginia Commonwealth University and Missions of Mercy (MOM Project).

— Donnie Knowlson, Special Olympics Virginia board member, Chesterfield, Va.


The Other Side Of The Opioid Story

Your article “Opioid Prescriptions Drop Sharply Among State Workers” (May 20) draws from biased and highly inaccurate opinion. Here’s a contradicting view.

Massive reductions in opioid prescribing are not a measure of success but instead signal failures of pain medicine under a draconian and unjustified program of persecution of doctors by Drug Enforcement Administration and state regulatory agencies. Tens of thousands of patients have been deserted by physicians afraid of losing their licenses if they treat pain with the only therapies that work for the majority of those with severe pain.

In the article, Beth McGinty is quoted as follows: “These reductions … signal a reduction in the overprescribing practices that have driven the opioid epidemic in the U.S.” This assertion is false. Overprescribing has never substantially “driven” the opioid crisis in the U.S. Statistics on opioid deaths are grossly inflated, representing deaths where a prescription-type opioid is among several factors detected in postmortem “tox screens.” No less a figure than Dr. Nora Volkow, director of the National Institute on Drug Abuse, informs us that addiction is not a predictable outcome of prescribing, and is rare even in at-risk patients.

The article states “One major factor is that many health insurers have imposed limits on prescriptions, as recommended by the CDC in 2016.” The Centers for Disease Control and Prevention recently issued a clarification that the guideline was never intended to justify mandatory tapering of legacy patients. The American Medical Association also repudiated the fundamental logic of the guidelines in Resolution 235 of the November 2018 House of Delegates meeting. Practicing physicians do not consider the equivalent of 50 morphine milligrams (MME) a high dose. Minimum effective dosages can range from ~20 MME to over 1000 MME, depending on metabolism.

Kathy Donneson, chief of CalPERS’ Health Plan Administration Division, says the surest sign of success will be when patients with chronic pain are “kept pain-free in other ways.” However, the literature for such therapies is abysmal, offering weak evidence and no direct comparisons of “alternatives” to properly titrated opioids.

CalPERS is on a course of action that is deeply damaging to patients. The agenda is cost control, not patient care. The other side of the story involves deserted patients who are committing suicide every day.

— Richard Lawhern, Fort Mill, S.C.


— Ben Miller, Denver


Not News To Me

As someone who has worked as a health actuary and executive for major insurers, I am surprised that Rand Corp. or anyone else thought a study needed to be done on what private insurers pay compared with Medicare (“Market Muscle: Study Uncovers Differences Between Medicare And Private Insurers,” May 9). This is OLD, OLD news. Hospitals and other health providers have been demanding more from private payers for the past 30 years! No study needed to be done. Just ask any actuary or health executive who works on contracting with providers. Despite the protestations of health economists who don’t work for insurers, providers demand more from private payers to make up for insufficient payments from Medicare and Medicaid. I can’t believe that this is a surprise to KHN or anyone who is knowledgeable about how medical insurance works in this country.

— Roy Goldman, Jacksonville Beach, Fla.

Why So Many Older Americans Rate Their Health As Good Or Even Excellent

A common myth about aging is that older adults are burdened by illness and feel lousy much of the time. In fact, the opposite is usually true. Most seniors report feeling distinctly positive about their health.

Consider data from the 2017 National Health Interview Survey (the most recent available), administered by the U.S. Centers for Disease Control and Prevention. When asked to rate their overall health, 82% of adults ages 65 to 74 described it as excellent (18%), very good (32%) or good (32%) — on the positive side of the ledger. By contrast, 18% of this age group had a negative perspective, describing their health as fair (14%) or poor (4%).

This trend toward positivity is also evident among adults age 75 and older: 73% of this group said their health was excellent (12%), very good (28%) or good (33%), while only 27% gave a fair (20%) or poor (7%) evaluation.

How could this be true when the majority of older adults — about 60% — have two or more chronic illnesses, such as diabetes, arthritis, hypertension, heart disease or kidney disease, and higher rates of physical impairment than other age groups?

The answer lies in how older adults think about their health. For many, good health means more than the lack of illness or disability. The components of health they tend to value more are vitality, emotional well-being, positive social relationships, remaining active and satisfaction with life, while poor physical functioning plays a less important role.

“Being healthy means being able to continue doing what I like: going to the theater, organizing programs, enjoying the arts, walking,” said Lorelei Goldman, 80, of Evanston, Ill., who has had ovarian and breast cancer. She also describes her health as “good.”

“I have all my faculties and good, longtime friendships,” Goldman continued. “I used to be a bad sleeper, but now I’m sleeping much better. Almost every day, there are moments of clarity and joy. I’m involved in a lot of activities that are sustaining.”

Even when older adults are coping with medical conditions and impairments, they can usually think of people their age who are worse off than they — those who have died or gone to nursing homes, said Ellen Idler, a professor of sociology at Emory University in Atlanta and a leading researcher in the field of “self-rated health.” By comparison, seniors still able to live on their own may feel “I’m doing pretty well.”

At some point, merely surviving can be interpreted as a sign of good health. “People hit their 80s and 90s, look around and feel pretty good about just being alive,” Idler said.

That isn’t true for younger adults, who measure their health against an ideal “there shouldn’t be anything wrong with me” standard. But expectations for what constitutes good health change as people move into later life.

“Older people expect some deterioration in health and aren’t thrown off course in the same way when it occurs,” said Jason Schnittker, a professor of sociology at the University of Pennsylvania who has studied self-rated health.

Resilience is also at play. As older adults adapt to illness and other physical changes, they tend to adjust their outlook. “I may be handicapped, but I can still walk,” one 86-year-old woman told Swiss researchers after being hospitalized due to a fall and forced to use a stick to get around. She considered herself fortunate and rated her health positively. “As long as you can get to church, as long as you can walk, you can say all’s well,” a man in his 80s declared after becoming severely disabled because of a slipped disc in his spine and an embolism. He, too, felt good about his health.

Lest you think older adults’ bias toward positivity is a sign of denial or a lack of objectivity, a large body of research shows it’s highly meaningful. “Self-rated health is very strongly predictive of longevity” as well as other outcomes such as cognitive health and use of health care services, Schnittker noted.

Idler and Yael Benyamini, a professor at Tel Aviv University’s Bob Shapell School of Social Work, were among the first scholars to highlight the association between self-rated health and mortality in a much-cited 1997 study that examined research reports from around the world. The link was consistent even when adjustments were made for respondents’ medical conditions, medication use, health care utilization, socioeconomic status and other factors.

In a phone conversation, Benyamini offered two explanations for this finding, which has been widely replicated. People may be acutely attuned to subtle changes in their bodies, like increased pain or fatigue, that end up being significant but may be hard for doctors to detect. Also, people may factor in how multiple medical conditions interact and affect them — something that medical tests don’t pick up.

“Say you have diabetes, angina and osteoarthritis. How does this affect your life? It’s very individual — no one can tell from the outside — and it’s hard to put your finger on as a physician,” she said.

Another possible explanation is that people who feel healthy are more likely to be active and take care of themselves, making it likely they’ll survive longer, Benyamini said.

Of course, this positivity isn’t universal. African Americans, Hispanics, people with lower levels of income and education, and individuals with poor social connections are more likely to rate their health negatively as they age. At younger ages, women rate their health more poorly than men, but this changes in later life, with men becoming more likely to report worse health and women becoming more optimistic.

Sometimes, surveys assess self-rated mental health separately, and results for older adults again overturn common assumptions about negativity associated with older age. The National Social Life, Health, and Aging Project, spearheaded by investigators at the University of Chicago, found that fewer than 1% of adults (ages 57 to 97) rated their mental health as poor; just under 8% considered it fair; nearly 23% thought it was good; nearly 41% believed it was very good; and 28% judged it excellent. This data, based on a representative sample of 3,101 individuals surveyed in 2015, was provided upon request and has not yet been published.

“Mental health becomes an even more important component of self-rated health with age,” Schnittker said. Depression, in particular, appears to be a negative influence, affecting how people view their circumstances.

Although Laurie Brock, 69, of Denver, has severe arthritis and systemic lupus erythematosus, she considers her health “very good” and credits her optimism, her close relationships and her “extremely active life.” Poor health would mean being bedridden, “not being able to go out or be as mobile as I am” or extended suffering, she said.

“My attitude now is ‘I’ve lived 70 good years, and I hope the next years are rich as well,” Brock said. “I think most people fear old age. But once they get there, it’s like, ‘Oh, I’m still going, I’m still OK.’ And fear becomes acceptance.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Pretty Girls Are Supposed to Smile

Photo

Credit Jon Krause

“There is no one who has not smiled at least once,” writes Marianne LaFrance, a Yale University psychology professor, in her 2011 book “Lip Service: Smiles in Life, Death, Trust, Lies, Work, Memory, Sex and Politics.” Her book explores how smiling unifies us. Like breath, the smile is universal. We smile to connect, to forgive, to love. A smile is beauty, human.

But I have never smiled. Not once.

I was born with Moebius syndrome — a rare form of facial paralysis that results from damage in the womb to the sixth and seventh cranial nerves, which control the muscles of the face. I was born in Britain, on the same day in 1982 the country’s first test-tube twins were born. But while science has created medical miracles like test-tube babies, there’s little that doctors can do for someone with Moebius syndrome.

Decades later, I still cannot smile. Or frown. Or do any of the infinite subtle and not-so-subtle things with my face that I see others in the world around me doing every day.

Doctors describe people with Moebius as having a “mask-like expression.” And that is what strangers must see. A frozen face, eyes unblinking. My mouth always open, motionless, the left corner of my lips slightly lower than the right. Walking down the street, I can feel the touch of casual observers’ eyes.

A child’s very first “social smile” usually occurs six to eight weeks after birth, eagerly awaited by new parents. Because, as an infant, my face remained so expressionless, when I began laughing it took my mother a while to realize that the sound I was making was laughter. At what point, I wonder, did I begin to compensate for the absence of my smile.

I am constantly touching my own face, making it move with my hands. I like the sensation of my fingertips shifting my otherwise motionless lips. It’s something I’ve done since I was very young.

I remember, age 5, kneeling at my grandmother’s dressing table, while my grandmother, without my noticing her, watched from around the doorjamb. Very quietly, I leaned toward her mirror, my elbows pressing into the cool granite top and, with two fingers, lifted the corners of my mouth into a tiny smile — a smile I only dared to share with my reflection.

This was the beginning of my understanding that I was different.

Not until I was 16 did Granny tell me that she had been watching me that day, saying, “It broke my heart.”

Through childhood and adolescence, I continued secretly “smiling” at myself in the mirror. Seeing the appearance, however awkward, of a smile on my own face helped me feel better about the day-to-day missed connections with others — schoolmates, girls in my ballet class, or adults on queue in the supermarket — who perhaps wanted to see me smile back at them.

Not smiling is about much more than surface image, though. It takes real stamina. To swallow a mouthful of food, for example, I use a few delicately placed fingers to press my lips closed. After swallowing, I try to lower the helping hand so that it looks as though I am merely brushing a stray crumb from my mouth, hoping no one notices that I do this many, many times more than a normal person would.

Going to sleep is another challenge. Because I can’t voluntarily close my eyelids fully, I have to either hold my eyelids closed with my right forefinger and thumb until they stay shut, or lie on my back with a cotton tank top laid over my eyes in such a way that their lids are sealed. Sometimes this gets exhausting. Sometimes I shed tears, and that speeds up the process.

I try to act around my disability. To pass. The one missing gesture I can never fully compensate for, though, is smiling. My body feels the smiles my face has never shown. When I explain to new friends why I don’t — can’t — smile, they say, Wow, that must be really hard. Not really, I lie, by now I’m used to it.

Still, there are moments when I feel the smile my face cannot physically make. It might be while I’m laughing over a shared joke with a friend, or when a child passing on the street smiles up at me. It translates as instantaneous pleasure throughout my whole body — a kind of minute awakening, both within and without. For a long time I wondered whether it showed. But close friends tell me my smile does come through, that they can see my smile.

Yet, recently, an elderly man passing me at a bus stop looked me up and down, caught my eye, and said, “Pretty girls are supposed to smile.”

I was speechless. I shook my head and laughed uncomfortably, hoping he wouldn’t pursue the subject. As he walked away, I remembered a high school photographer cheerily calling “Smile!” just before the blinding white flash. “Smile,” someone says, and again I’m 5 in the mirror, or 16, cringing, trying to do something I cannot do, and waiting for the uncomfortable moment to pass.

Effy Redman, a graduate of Hunter College’s creative writing M.F.A. program, lives in Saratoga Springs, N.Y.

My Brother, the Hospice Graduate

Photo

Credit Giselle Potter

When I was a college sophomore living in a sorority house at the University of California at Santa Barbara, my parents called to tell me that my baby brother, Gavin, was dying. He had been given a diagnosis of a very rare disease, Aicardi–Goutieres Syndrome.

The doctors immediately placed him in hospice care.

He was 4 months old.

I hung up the phone and rode my red beach cruiser to class, trying to pretend that it was like any other day. I sat through Spanish class, but stared off into the distance, numb to what was happening. When I emerged, the sun seemed too bright. People were laughing, talking on their phones, surfing waves at sunset and meeting up with dates at coffee shops.

I thought back to Gavin’s birth in June. He looked like the rest of the babies in our family, with a thick pad of blond hair. A happy baby. Then at 6 weeks old he started having fevers of 104. They turned into weeklong affairs. And no one knew why.

My parents and Gavin’s doctors tried, for the next few months, to solve a seemingly unsolvable case. We just wanted to know what was wrong. But when we finally had the right diagnosis, it was awful. His disease had triggered brain calcifications, causing permanent brain damage. He was going to lose his motor skills and be unable to eat, so he would eventually die, we were told.

At first, I wanted to avoid dealing with the situation. The playground feeling of my oceanfront college campus was in stark contrast to the atmosphere at home, where my devastated family waited, heartbroken. My impulse was to stay away. I didn’t want to be crushed by the grief that was promised to me.

But I also knew I couldn’t live with myself if I never tried to face it. So I dropped out of college and spent every day with him and the rest of my family, including my sisters, who were 9 and 14 at the time.

Gavin’s disease showed up like Louisiana rainstorms — quick, strong and mean. Sometimes he was the handsome baby who smiled at me with his innocent blue eyes. Then, it was as if he was gone. Possessed. His fevers were now paired with jitters and vomiting. Gavin would shriek uncontrollably, turn a pasty gray and roll his eyes in different directions.

Mom called these visits from the Monster.

The hospice nurses stopped by every week to check Gavin’s temperature and weigh him. There was no handbook on learning to love your dying baby brother, but eventually, I did. Instead of hiding from the Monster — when his body shook, his lips turned jelly purple, and drool spilled from his mouth — I looked at him and said: You are worth it.

With his impending death sentence, Gavin was baptized in an oversize white gown. Mom wanted his soul to be protected.

After the ceremony, we played a slideshow of his short life. I saw a picture of me holding him and thought to myself, how could I not love you? We all loved him, the best way we knew how.

My parents did not give up on him, even though he was on hospice. A major change came when a friend of my mom’s who was an occupational therapist suggested the Haberman bottle, a baby bottle with an elongated nipple for children with special needs. Part of the reason Gavin was in hospice care was that he could no longer breast-feed and it was hard to get him nutrients. But he took pumped breast milk through that bottle.

And somehow his demise never came.

On Gavin’s first birthday he was taken off hospice: a hospice graduate.

The journey shifted. Instead of waiting for a baby to die, we were learning to love and live with a handicapped boy.

Now, Gavin is 9 years old. He is a quadriplegic; he cannot walk, talk or eat solid foods, but he is a survivor. He is joy.

That doesn’t mean his life is easy – for him or for the rest of the family.

Every morning one of my parents carries him downstairs around 7 a.m. They sit him in an egg-shape chair in front of the TV to watch cartoons, usually “SpongeBob” (he’s graduated from “Sesame Street”). His breakfast usually involves bran cereal for digestion, a fried egg, a couple of blueberries, maybe a waffle, sometimes crispy pork sausage. All of that is put into a coffee cup with whole milk and butter, and puréed with an immersion blender.

Gavin’s three epilepsy medications get pulled into plastic syringes. Then the hero of the morning carries a tray, with a handful of towels and a water cup, along with the delicious breakfast surprise and medicine into the TV room, and the real work begins.

Feeding Gavin can take up to an hour. And it can be messy. Sometimes he spits up his food, other times he is just not feeling well and he lets it roll down his chin, onto his neck.

Gavin’s life includes physical therapy, occupational therapy and speech therapy. But it also includes floating in the pool in a life vest, going to school and even gleefully crossing the finish line in a marathon – with my husband pushing him in a stroller.

Instead of dismantling our family, he has brought us closer together. We treasure Gavin’s small accomplishments, whether that is running down the driveway in his special gait-training walker or using an eye-gaze communication device or nodding to let us know that he wants to use the bathroom, play with his sister or bounce on the trampoline.

We don’t know what his future looks like. But we don’t know what the future looks like for any of us. The mystery of his life is no different from any of ours.

Courtney Lund is working on a memoir about her brother.


Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

With Hippotherapy, the Horse Provides the Therapy

Photo

Credit Whitten Sabbatini for The New York Times NYTCREDIT: Whitten Sabbatini for The New York Times

Three-year-old Jack Foster sat on his mother’s lap as she wrapped a towel carefully around his neck.

“Jack has cerebral palsy and low muscle tone,” said his mother, Emily Foster, of Northbrook, Ill. “The biggest challenge is holding his head up.”

With help from his occupational therapist, Ms. Foster fit a riding helmet on Jack’s head and clicked the chinstrap buckle into place. She then watched as the occupational therapist and two volunteers positioned her young son onto a red pony. Jack seemed delighted as one volunteer stood to his right and softly sang, while another led the pony slowly around the arena.

Jack was at Horsefeathers Therapeutic Riding in Lake Forest, Ill., for hippotherapy, a form of equine-assisted therapy conducted by licensed physical, occupational and speech therapists to improve muscle tone, speech and other functions (“hippos” is the Greek word for horse; the American Hippotherapy Association has a therapist locator at americanhippotherapyassociation.org). Hippotherapy is used to treat a variety of conditions, including brain injuries, cerebral palsy, spine curvature, intellectual disabilities, language disorders and sensory processing disorders.

The natural movements of the horse and the environmental cues enable therapists to work toward treatment goals in a setting that might feel like fun, but that research shows can have real benefits. A recent study in Physical & Occupational Therapy in Pediatrics, for example, found that children with cerebral palsy had increased body control after only 10 sessions of hippotherapy. Gross and fine motor skills also improved.

A horse striding around the barn takes around 100 steps a minute, said Dr. Tim Shurtleff, an instructor with the occupational therapy program at Washington University in St. Louis. Each stride pushes the rider’s pelvis forward, so after 35 minutes, a rider undergoes more than 3,000 repetitions of “trunk challenge,” in which the trunk is pushed forward and back. With each step the horse takes, the rider must subtly work to stay upright.

“That’s the power of this – it’s an intensive movement experience,” Dr. Shurtleff said. “The person on the horse is forced to respond to that movement.”

For riders like Jack Foster, who has been doing hippotherapy for over a year, the pelvic thrust helps to strengthen the low muscle tone in his neck and trunk, while relaxing the muscles in his hips and thighs. In his daily life “he will arch and extend, which makes his hips and his thighs really tight,” Ms. Foster said. “Sitting on the horse stretches it.”

During a typical therapy session, Jack sits on this horse facing both forward and backwards. Sessions can include a ball toss or placing rings onto long rods and cones, designed to improve trunk and neck control as well as his reaching abilities.

Researchers are now testing hippotherapy as an intervention for adults with multiple sclerosis and other neurological disorders. Dr. Deborah Silkwood-Sherer, the program director for the physical therapy department at Central Michigan University, said hippotherapy can also boost motivation in children who have disabilities and have been in therapy for years.

“People don’t realize they are working hard on a horse,” Dr. Silkwood-Sherer said. The visual and sensory input of a barn and stable setting provides additional stimulation. “For kids, they never think they are doing therapy.”

Meredith Bazaar of Ringwood, N.J., a speech and language pathologist, uses hippotherapy to treat clients, including those with apraxia, a brain disorder that makes it difficult to articulate or speak words.

“The movement of the horse is so repetitive and coordinated,” she said, allowing her to manipulate a client’s lips, chin or cheeks with her hands to help them make a desired sound. With every stride the horse takes, the client repeats the target sound, such as “ga,” which might double as a command to have the horse “go.”

At Horsefeathers, the founder and executive officer Nick Coyne has 10 gentle horses and ponies he uses for both hippotherapy and adaptive riding, which enables people with physical and mental disabilities to ride horses. He refers to some of his animals as “bomb horses,” meaning a bomb could go off and the horse would not react.

The horses are all trained to stop promptly if they sense a rider is slipping and to ignore the sudden, delighted shrieks a rider might make, as well as spastic movements, Mr. Coyne said.

Alex Brock, 22 of Lake Bluff, Ill., has microcephaly and cerebral palsy, and is also nonverbal and incontinent and has difficulty processing language. He aged out of the public school system, but once a week he eagerly leaves his wheelchair to work with Mr. Coyne as an adaptive rider.

His mother, Trina Brock, was initially incredulous when she heard about adaptive riding at Alex’s former high school. “My first thought was, how is he going to ride a horse?” she said. But she said her son now eagerly anticipates his weekly visits to the barn, and says the exercise helps strengthen his trunk.

It takes three people to help Alex ride, and Ms. Brock said the first time she saw her son on a horse, “I cried.”

Hippotherapy is not suitable for everyone. Ms. Bazaar said some clients turn out to have horse allergies, and allergy medications can make them too drowsy to participate. People with spinal abnormalities like spina bifida may not be good candidates either, and those with Down syndrome and other conditions should be first examined by a physician to determine if their spines are stable enough to endure the rides, she said.

But for children like Jack Foster, riding a horse can open up new opportunities. “It was the first therapy he had done without me,” his mother said.

After Bitter Decades, a Wounded Vietnam Veteran Handcycles Back to Hope

Video

Battling P.T.S.D., One Mile at a Time

William Alvarez has struggled with depression and post-traumatic stress disorder since losing his legs during the war in Vietnam. His recent interest in hand cycling has helped him cope.

By ROBIN LINDSAY and NOAH REMNICK on Publish Date July 1, 2016. Photo by Hiroko Masuike/The New York Times.

You would be forgiven if, one of these afternoons in Central Park, you failed to notice a cyclist named William Alvarez. He’s easily lost amid the whirl of riders and runners, and of course there is the matter of his considerable velocity, 12.5 miles per hour on average.

When he stops, though, for a drink of water or a red light, a few of his trademarks come into focus. First is the fact that Mr. Alvarez is not riding a bike, but a three-wheeled recumbent handcycle. Next you might notice the trio of flags flapping behind him in the wind: one for the United States, one for the United States Army and one for prisoners of war. And then there is the oversize sack strapped to the rear of his cycle, where he stashes a pair of beige-colored carbon fiber legs.

Though Mr. Alvarez rides with the commitment of a lifelong devotee, this routine once seemed unimaginable. As a soldier during the war in Vietnam, Mr. Alvarez, now 71, lost both his legs in a land mine explosion, an episode that set off decades of severe depression and post-traumatic stress disorder.

Last year, however, Mr. Alvarez resolved to break the cycle of solitude and torment that had consumed him for half a century. Handcycling, he says, has provided him with a newfound resilience and autonomy. These days he rides at least five times a week, typically 20 to 30 miles a trip, as he trains to compete in the New York City Marathon this fall.

“When I’m riding, it’s like I’m finally free,” he said. “I can forget about all of my problems and just feel the breeze on my face. Nothing else matters.”

Photo

As a young man, Mr. Alvarez had hoped that the United States Army would afford him the sense of purpose and belonging that had eluded him in childhood.

As a young man, Mr. Alvarez had hoped that the United States Army would afford him the sense of purpose and belonging that had eluded him in childhood.Credit Hiroko Masuike/The New York Times

As a young man, Mr. Alvarez hoped that the Army would afford him the sense of purpose and belonging that had eluded him in childhood. After his parents divorced when he was 6, he lived in a series of foster homes in the South Bronx, often separated from his three older siblings. “There wasn’t a lot of care, so I just learned to make it on my own,” Mr. Alvarez said.

In 1969, spurred by his anti-Communist convictions and by foster parents who had fought in the Korean War, Mr. Alvarez journeyed to 39 Whitehall Street in Manhattan for his induction. “I felt a sense of responsibility,” he said. “Lots of people went to Canada, but that never crossed my mind.”

In Vietnam, Mr. Alvarez watched countless soldiers lose their lives or their limbs. Early one morning in 1972 he was on patrol with the 101st Airborne Division. As the soldiers passed through the jungle, Mr. Alvarez tripped a land mine.

When he came to hours later, at a MASH unit, a chaplain was hovering above, administering the last rites. Mr. Alvarez somehow survived, but he emerged from the hospital 13 months later to a different world. Support for the war and its veterans had dwindled in the United States, and former soldiers were even under attack. Mr. Alvarez, who used a wheelchair, was disparaged and called a killer. It took him decades, he said, to get the services he needed.

Mr. Alvarez tried to rebuild his life. He married a woman he had known before the war, and they took off across the country, seeking adventure. But the trauma of war haunted him, he said; as he withdrew into depression, his marriage fell apart. One day in California, while riding a Vespa scooter from Santa Cruz to San Jose, he deliberately veered off the side of the road into a ravine. He would try suicide two more times.

“My mind was just going to war with itself,” he said. “Every day was another battle and I couldn’t find joy in anything.”

Mr. Alvarez eventually managed to subdue his suicidal thoughts, but his post-traumatic stress disorder left him reclusive and unable to keep a steady job, he said. For years, fellow veterans urged him to try cycling, insisting on the sport’s therapeutic virtues.

Last May, Mr. Alvarez finally relented at an event in Central Park co-hosted by Achilles International, an organization that runs athletic programs for people with disabilities, and theV.A. Adaptive Sports Program, which is run by the Department of Veterans Affairs. He climbed onto the seat of a cycle and set off.

“I said to myself, O.K., this is it,” Mr. Alvarez recalled. “It was fun. Imagine that. I hadn’t felt that emotion in a long time.”

Photo

Handcycling, Mr. Alvarez says, has provided him with a newfound resilience and autonomy.

Handcycling, Mr. Alvarez says, has provided him with a newfound resilience and autonomy.Credit Hiroko Masuike/The New York Times

Several studies have shown that exercise can help those with PTSD. The endorphins released during intense physical activity, the focus on coordination and the skills gained often serve as an antidote to the depression, sleeplessness, anger and suicidal tendencies associated with the condition.

“We’ve been getting amazing feedback from the veterans,” said Jonathan Glasberg, 49, the coordinator of the Adaptive Sports Program. “There’s the physical component, of course, but people are also just happier.”

More than 200 veterans are currently taking part in the Adaptive Sports Program in New York, which offers golfing in Mosholu Parkway in the Bronx, fencing in Chelsea and sailing on the Hudson River. Participation has more than doubled in the last two years alone, Mr. Glasberg said.

In the months since Mr. Alvarez started training, his body has begun to change, he said. He has shed 15 pounds, his hands have calluses and newly formed muscles swell from his shoulders. The most dramatic metamorphosis, though, has taken place in his psyche.

“My whole body chemistry changed,” he said. “Everything started working the way it’s supposed to. I’m more sociable than I was before, not as depressed, and I’ve got a new sense of energy.”

Mr. Alvarez has not banished all of his demons. He still endures streaks of depression, and just the other week he suffered a vivid flashback, he said. Now, though, when he feels the memories closing in, he reaches out to friends or goes out for a ride on his own.

Last month, Mr. Glasberg was pleasantly surprised when he called Mr. Alvarez to check in. “He told me, ‘Sorry I can’t chat, I’m meeting some friends under the Brooklyn Bridge,’” Mr. Glasberg recalled. “I was thinking: Is this really the same guy?”

On a recent afternoon, Mr. Alvarez headed from his apartment on East 22nd Street to a nearby storage unit, where he exchanged his wheelchair for his handcycle, a sleek black model that he tends to with great care. From the storage facility, he often circles the entirety of Manhattan, but on this day he planned to meet up with a group of riders in Central Park. He greeted all warmly but soon peeled away to take the course at a faster pace.

As he steered his way up the sloping hills toward the northern end of the park, Mr. Alvarez began to pant from exhaustion, but he continued to churn away at a steady clip, refusing to succumb to gravity’s tug. Beyond the crest, he knew, he’d be gliding with ease.

The Other Bathroom Wars

Photo

Credit iStock

Jane Serge remembers her father pushing her wheelchair into a men’s room in the late 1970s. “Close your eyes,” he would say, as he quickly wheeled her toward the stalls.

Today, a father who took his disabled daughter into a men’s room in a public building in North Carolina technically would run afoul of the state’s so-called “bathroom bill,” which requires that people over the age of 7 use the bathroom that matches the sex on their birth certificates. While the law is aimed at transgender people, disability advocates worry that it also could affect people with disabilities who, because they need assistance from an opposite sex caregiver or parent, also use opposite sex bathrooms.

Parents like Jennifer Eldridge-Bird of Miami, whose sons, ages 11 and 15, have autism, say their children’s disabilities require that the parent and child stay together at all times.

“They’re not very high-functioning,” she said. “If I’m going in the ladies’ room, they’re going in the ladies’ room.”

Sharisse Tracy, a mother of four in West Point, N.Y., said sending her 8-year-old, who has autism, into a shared men’s room alone is out of the question. “I wouldn’t send him in anywhere alone, let alone a men’s room,” she said.

For Laura Rossi and her 13-year-old twins, using public bathrooms became more challenging as her children have gotten older. Her son, Matt, has Tourette syndrome, accompanied by significant impairment of fine motor and social skills.

“When the twins were little and cute, there were all these smiles and nodding heads,” said Ms. Rossi, a public relations professional who lives in Jamestown, R.I.

But as they got older, she began to hear criticism when she took them into the women’s room. “Matt’s needs are invisible, and he got tall very quickly,” she said. “If there’s not a family bathroom, we got a lot of looks and comments, you know, meant for you to hear but not really ‘to’ you — like ‘this is not the boys’ room.’”

With restroom access a topic of national debate, many people with disabilities and their families are hoping that conversation extends to expanding access to public facilities for every person.

For many of the nearly one in five Americans (and about 5 percent of school-age children) with some disability, lack of access to public toilet facilities challenges their ability to take part in ordinary daily life. For some, like Ms. Serge, 46, who was born with cerebral palsy, the challenges are primarily physical.

“The stalls aren’t wide enough,” she said, quickly ticking off a list of problems she faces regularly in public restrooms in Amherst, Mass., where she lives. “If the door swings in, not out, you can’t close it once you’re in there.” The rails or toilet seats are often loose; there’s not room for her and for someone to help her and she has hit her head on a badly positioned huge toilet paper roll more than once. “And by the time I’m done, the motion-activated flush has gone off, like, 14 times.”

For others — parents of teenage and adult children with physical disabilities, some of whom use diapers, or of older children and teenagers with autism or other cognitive and emotional difficulties — the challenges have to do with their ability to assist family members.

Family members of people with disabilities say large, multi-stall public restrooms present the biggest challenge. Some large retailers now offer family bathrooms, which are ideal because they are private but large enough to accommodate multiple family members as well as wheelchairs and strollers. Individual bathrooms also work better for everyone, but space and cost constraints mean that many public spaces don’t offer them.

Some people say that if there isn’t a bathroom that accommodates the needs of disabled family members, they just stay home.

“We plan all our trips around Michael,” said Jean Lucas, whose nonverbal 7-year-old son uses diapers and a wheelchair. “Sometimes I’m in the middle of the floor, changing him while people are washing their hands.” It’s a situation the South River, N.J., mother of four does her best to avoid. “People say, oh, he doesn’t know what’s going on, but he knows. He understands. He deserves privacy.”

Eric Lipp, executive director of the Chicago-based Open Doors Organization, which advocates for people with disabilities in the travel and tourism industries, says there is a slowly growing movement to offer facilities for changing a diaper on an adult or an older child — a large, stable surface, ideally with a lift, like those designed by the nonprofit Changing-places.org

“Family bathrooms have been a really big addition for people with disabilities,” he said.

Jennifer Kasten, a mother of two daughters, one of whom uses a wheelchair, and a lawyer and special education advocate in Scottsdale, Ariz., said that creating accessible bathrooms isn’t just an issue for people who are transgender or disabled, but something that may affect all people as they age or as their health circumstances change.

“Accessibility has unintended consequences that are good for everyone,” she said, “How we think about accessible bathrooms says a lot about how we think of people with disabilities in general.”

Interested in more Well Family? Sign up to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

Living With Cancer: A Farewell to Legs

Photo

Credit Camilla Engman

On a bright, cold Sunday in mid-January, I returned home from visiting a frail member of my cancer support group and opened the garage to haul the recyclables up the steep driveway to the street. After a few steps, my feet started to slip and I fell with a thud on my bottom. The big bin toppled over me, scattering plastic containers and cardboard boxes, as my hands reached down to feel a sheet of ice that had been invisible on the asphalt.

I was about to discover what happens when cancer patients must deal with unrelated physical injuries.

After some screams of pointless rage, I realized that my husband — who was recovering from surgery for a torn tendon — could not hear me inside the house. So I crawled, using my arms to prop myself up, back into the car where I phoned and directed him to bring his walker to the front door. I managed to steer the car up the driveway, hobble with the walker inside, and collapse onto the blue couch. If I did not move, the throbbing seemed bearable. Since it was late afternoon and my husband’s injury rendered him unable to drive me to the hospital, I settled down in the hope that rest would help.

But I awoke without the use of my legs. Any pressure was excruciating, so we called a friend for a lift. At the E.R., scans showed three pelvic fractures. I would be unable to get around for quite a few days and then not without a wheelchair or a walker for weeks. Unlike Ernest Hemingway, I did not believe that I would soon feel “strong at the broken places.”

“What’s next?” Mrs. Job started kvetching inside my head. “Locusts?” How could doctors perform a pelvic operation on a person who had undergone umpteen abdominal surgeries for ovarian cancer? With an ostomy, my innards were not like those of normal people. Might such an operation trigger a recurrence? What if the anti-cancer drug I take daily impedes bone regeneration?

When the E.R. doctor explained that in this case the fractures should heal themselves, a wave of relief enveloped me. Her words prompted a series of reflections about disability and cancer.

To begin with, I knew that the experience would have been worse, if I had started out disabled and subsequently received a cancer diagnosis. Paradoxically, you need to be agile and sturdy to manage the unrelenting routine of cancer treatments. Only now do I realize how exceptionally difficult it must be for disabled cancer patients to travel repeatedly to the hospital, to undergo operations or infusions or radiation, and to cope with debilitating side effects. I had learned how to negotiate those straits and could imagine the difficulties of adapting them to my altered condition.

Back at home, I found myself marooned on the blue couch, unable to reach the bathroom or the bedroom or even sit up without terrible spasms. My attendance at support group meetings would have to cease and I feared that I would never see one of my friends, Carrol, again.

Carrol had started on hospice care in October. She remained at home for three months, but then, unexpectedly, she tolerated some food. Confined to her bed and unable to determine where or how quickly metastases were advancing, she did not know how much time she had: another week, a month, or more. Recovery was not in her lexicon.

At the close of every visit, we had made our final embraces and goodbyes. A week or two after my fall, I realized that a profound appreciation of her past life and a profound acceptance of her future death stood Carrol in good stead, not a macho determination to battle and beat the disease.

Carrol knew that a clinical trial had granted me a precious remission. On the day I received news of her death, I pondered her decision — upon learning that her cancer was terminal — to throw herself a Last Chance to Dance party.

She had wanted me to relish a reprieve she never received. My unforeseen stay of execution should ground my determination to embrace whatever befalls me — for better or for worse, in sickness and in health — until that moment when I would arrive at the state she inhabited when I last saw her. Although unwelcome, disability has everything to do with my future life, not my future death.

As hydrocodone kicks in and physical therapists teach me how to negotiate without two weight-bearing legs, my temporary immobility shrinks in significance. These professionals try to wean me from an ungainly version of slipping and sliding steps — something like the Mashed Potato — that get me from the wheelchair or the walker onto the toilet or the bed.

Considering the example of Carrol, I bid farewell to my legs and take up arms against a sea of troubles more negotiable than the miseries with which she had to contend. Doing the Mashed Potato, wincing in pain, graceless under pressure, I hoot to nobody within hearing: the hell with you, Hemingway! I am quarreling with the writer who (to my mind) most brilliantly and foolishly dramatizes the challenges of personal bravery.

Later that night, as if conjured, he slides into a chair next to the blue couch, lifts a glass, and breathes the word “courage.” It’s a complicated matter, we agree, and then we clink.

Related:

For more fitness, food and wellness news, follow us on Facebook and Twitter, or sign up for our newsletter.