Angela Cooper arrived home from work to discover her daughter's temperature had spiked to 102 degrees - a sign that the teenager, who has cancer, had a potentially deadly bloodstream infection. As Cooper rushed her daughter to the hospital, her mind raced: Had she...
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I’m the perfect person to price shop for an operation. But the process went terribly
After three months of using hot compresses to shrink the stye on my daughter's eyelid, it wasn't getting any smaller. My daughter is prone to this sort of growth, called a chalazion. This one would have to be removed surgically, like the one she had removed from the...
Writing through pain: A cancer survivor guides patients with pen and paper
Would you be interested in participating in a writing group on The Caregiver Space? We've had The Page Listens since the beginning, but we'd like to organize a group that discusses the process together. In 2013, Lynn Scozzari was staring at a photo of a naked woman...
Their genes put them at high risk of Alzheimer’s. So they’re experimenting – on themselves
SAN DIEGO - Everyone at the meeting had one thing in common: a ticking time bomb buried in their DNA. The engineers, physicians, financiers, and farmers gathered here this month all had learned through genetic testing that they carry a copy or two of APOE4, an allele...
This 6-year-old suddenly had trouble reading. Why was she going blind?
For the first 6 1/2 years of her life, Ruby Bond was like any other happy, healthy kid. Then one summer evening in 2014, Ruby's mother noticed she was having trouble sounding out words in a homework assignment; her progress learning to read had stalled. When her...
Glen Campbell’s doctor discusses his struggle with Alzheimer’s
Fans ‘didn't care if he messed up': Glen Campbell's doctor discusses his struggle with Alzheimer's Glen Campbell's decades-long musical career came to an end Tuesday, when the 81-year-old country music superstar died after a six-year struggle with Alzheimer's disease....
Decline in U.S. life expectancy deserves more local and national attention
Arguably the greatest American advancement of the 20th century was the 30-year increase in U.S. life expectancy at birth, from 47 years in 1900 to 77 years in 2000. Having achieved that, it's easy now to take it for granted. Some worrisome signs, though, point to the...
Physicians need to openly discuss medical mistakes and near misses
Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient's losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me...
‘Are you saying I’m dying?’ Training doctors to speak frankly about death
NASHVILLE, Tenn. - The doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn't need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six...
Missing appointments? Skipping doses? You might get fired by your doctor
A new survey of primary care doctors reveals an interesting statistic: 9 out of 10 practices have told a patient not to come back. The doctors have fired their patients. The research, published in JAMA Internal Medicine on Monday, found that firing patients doesn't...
After four years, it took a geneticist a few hours to unravel a boy’s puzzling illness
From the moment the boy was born on a muggy Texas afternoon in May 2012, his parents, doctors, and nurses knew something wasn't quite right. From the size of his head to the way he held his body, he wasn't normal – but it wasn't clear exactly why. The parents noticed...
I didn’t want to witness the anguish of loved ones in unbearable pain. But how could I not?
I've heard many painful things in the years I've been a caregiver. "God. Dear God. Help me!" That was my mother, writhing from trigeminal neuralgia, a condition that can feel like being attacked by a wrathful enemy armed with very sharp knives. Sometimes she went to...
Gender gap in Alzheimer’s disease rates, caregiving needs more attention
Every day, Alzheimer's disease forces women to make hard, life-altering choices about their careers, relationships, and finances. Christell and Shari Anderson are two of them. In 2004, Christell was diagnosed with Alzheimer's, which slowly stole away her life as she...
A community forged by loss and love – and photographs that found joy at the end of life
The emails poured in by the dozen, day after day after day. They came from parents and children, from violin makers and doctors, from sisters, husbands, colleagues, teachers. Some were spare, just a line or two. Others went on for pages, full of emotion. I read them...
‘Everybody knows somebody’: This state is a laboratory for the future of Alzheimer’s in America
North Dakota's sparse geography has long made it a natural frontier: Pioneers here pushed the boundaries of westward expansion, then agriculture, and recently domestic oil drilling. Now the state finds itself on the leading edge of a new boom that it never would have...
Overcoming opioids: The quest for less addictive drugs
Tummy tucks really hurt. Doctors carve from hip to hip, slicing off skin, tightening muscles, tugging at innards. Patients often need strong painkillers for days or even weeks, but Mary Hernandez went home on just over-the-counter ibuprofen. The reason may be the...
A tragic disease robs patients of their memory, but makes their visual world flourish
Carol Spence had been an accomplished artist all her life, first working in graphics, and then as a maker of handcrafted, miniature dolls, which she sold at craft shows and galleries. Three years ago, without notice or explanation, she took exclusively to the canvas,...
What makes a food ‘healthy,’ anyway? FDA tries to answer
WASHINGTON - When the Food and Drug Administration declared that KIND bars - that sticky fusion of fruit, nuts, chocolate, and other treats - couldn't use the word "healthy" on its wrappers in 2015, the KIND company took offense. It filed a petition objecting to the...
My sister made her end-of-life wishes clear. Then dementia took hold
Before my sister was struck by frontotemporal dementia, her wishes were very clear. No feeding tube or breathing machine if she became profoundly incapacitated, without the prospect of recovery. No aggressive life-sustaining measures. And she wanted to stay in her...
My daughter is fighting a rare disease. A ‘streamlined’ FDA won’t help her
My 4-year-old daughter, Elle, is in the fight of her life. Her older sister, Milla, lost her fight last November. Their opponent? Batten disease, a rare, fast-moving, and fatal condition that destroys the central nervous system's ability to function. Elle has a chance...
Don’t write us off: People with dementia press for more rights – and respect
Ten months ago, Peter Mittler stood before a global audience of Alzheimer's disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed...