Friday, April 24, 2009
Seattle home when someone attacked him with an ax. He survived, but
the penetrating blows to his skull left him in a minimally conscious
state. Today he lives with his parents and two siblings in a St.
Louis suburb. As I talk with his family in the kitchen, Joshua sits
next to us in a wheelchair that he can't move himself. After a
$17,000 remodel, his wheelchair can fit into the accessible bathroom,
but he can't use the handrails on the walls. In the den there's a
standing frame—when his mom uses a Hoyer lift to transfer him into
it, the frame can support his body in a standing position, which is
important for his circulation.
As a resident in physical medicine and rehabilitation, I handle the
medical rehabilitation of people after disabling injuries. Severe
traumatic brain injuries constitute one of my most challenging ICU
consultations. After neurosurgery has saved lives (in Joshua's case,
by cutting out portions of skull so that the swelling brain can
expand), we're called in to answer the family's burning question:
What's the potential for meaningful recovery? Unlike in brain death,
where we can look for flat-lined brain waves or the cessation of
intracranial blood flow, doctors don't have confirmatory tests for
consciousness and its shades of gray. That's one reason studies
uncover alarming rates of misdiagnosis of the vegetative state. About
one-third of the time, "vegetative" patients are minimally conscious
or even better.
Tuesday, April 21, 2009
WrongDiagnosis.com is one of the world's leading providers of online medical health information. The site is an independent, objective source of factual, mainstream health information for both consumers and health professionals.
WrongDiagnosis.com provides a free health-information service to help people understand their health better, offering crucial and factual health information that is otherwise difficult to find. The objective of the site is to encourage consumers to be informed and interested in managing their health, and to know what questions to ask their doctors to help ensure they are getting the best healthcare possible.
The Mayo Clinic has combined its medical expertise with Microsoft Corp.'s technology in a free Web site launching Tuesday that will let people store personal health and medical information.
The Mayo Clinic Health Manager, as the site is called, is one of many emerging services for so-called personal health records. The sites, from companies such as Microsoft and Google Inc. and major health insurers, are meant to give people an easy way to stash medical information and transfer it to a new clinic, hospital or specialist. But those providers aren't necessarily ready for such an electronic revolution, which for now means it takes some work on the patient's part to set up and maintain the records.
The Mayo Clinic Health Manager uses Microsoft's HealthVault system to store medical histories, test results, immunization files and other records from doctors' offices and hospital visits, along with data from home devices like heart rate monitors.
Anyone can sign up for an account, not just Mayo Clinic patients. Users can give access to different slices of their health information to doctors and family members as the need arises.
The site prompts people to get started by answering questions about their family medical history and current and past health problems, allergies and medications. Based on that information plus age, gender and other factors, the site recommends additional tasks — scheduling a mammogram, for instance — and articles for further reading.
I went in for minor surgery and came out with a vicious infection. A story about contaminated hospitals, dirty doctors and the bacteria that are killing 8,000 Canadians a year
by Stéphanie Verge
Hospitals terrify me. So at 30 years old, I considered myself lucky that I'd never had to stay in one. I'd never broken a bone, still had my appendix, my tonsils were present and accounted for.
My luck ran out last year. I needed to undergo a minor gynecological procedure—in and out the same day—and was booked into Sunnybrook for January 9. In a last-ditch effort to avoid surgery, I'd called the hospital and asked if the operation should be postponed because I'd had a cold over Christmas. I didn't want to risk infecting some poor creature with a compromised immune system. "You know, a sick person," I practically whispered through the receiver to the nurse on the other end of the line. I was assured there was no cause for concern.
I had kept the number of people who knew about my operation to a minimum: the necessary co-workers, a few friends and my two sisters. I didn't tell my parents, because I knew they'd worry and insist on being involved. As simple as the surgery was, I was anxious enough. I took only ID, keys, my cellphone and cab fare to get home. When I stepped off the bus in front of the hospital, I was filled with a low-grade panic.
The operating room was frigid. When I made a comment about the temperature, someone explained that it was to keep the staff cool under the bright lights. I was covered with a thin blanket, which in my apprehensive state felt more like 100 pounds of lead. The last thing I can remember is a mask being placed over my face and my mild disappointment that no one asked me to count back from 10, like they do on TV. An hour or so later, I came to in a recovery room and for one disjointed moment had no idea where I was or what I was doing there, until a searing pain bloomed in my crotch and spread through me, as if to serve up a reminder.
I spotted my surgeon—a dour 60-something man with a gentle touch—heading my way. He said the operation was a success and handed me a sheet of paper outlining outpatient procedures. I couldn't have sex (without a doubt, the furthest thing from my mind), would need to take frequent sitz baths and could dull the pain with Tylenol 3s.
What he didn't know was that my minor procedure would soon become a major nightmare. At some point during my brief stay, I contracted a superbug. I was one of the estimated 250,000 people a year in Canada who leave the hospital with a new infection—acquired, more often than not, because of unsanitary conditions. Patients check in to hospitals making a silent pact with those who work there that they will leave healthier than when they arrived. Showing up for a routine surgery and exiting with a potentially deadly infection is not part of the agreement.
Monday, April 20, 2009
Every week, New York Times editor Dana Jennings writes about his own aggressive case of prostate cancer. In today's Science Times, he writes how illness has created an unusual bond with his 19-year-old son.
In a separate story, Owen Jennings also shares his insights about illness.
The transition from high school to college is tough for most students. But for those with attention deficit hyperactivity disorder, university life poses a host of academic, medical and personal challenges. Students with A.D.H.D. struggle to stay focused on their studies and to meet the organizational demands of schoolwork.
I wrote about the issue in this week's Education Life special section.
For a teenager struggling to stay organized, the unusual class schedules, hourlong lectures, late-night study sessions and disrupted sleep routines of college can be a nightmare. Studies suggest that college students with A.D.H.D. are at greater risk for academic and psychological difficulties, and have lower grade-point averages, than peers without the problem. "We have found that there are a lot of significant barriers these students face," says Dr. Mark H. Thomas, a physician at the University of Alabama student health center, who is part of a campuswide effort to provide additional resources to students with the disorder, including a series of podcasts on how to cope.
I often find myself tearing up over unexpected things. Recently, I cried watching the amazing performance by sweet Susan Boyle, the 47-year-old singer who wowed both judges and audience on "Britain's Got Talent." Even talking about Christian the lion makes me cry, as does Matt Harding's now-famous happy dance around the world. My latest public display of emotion was this weekend, watching the Hannah Montana movie with my daughter. I felt ridiculous crying during a scene where Miley Cyrus sings with her father.
So I was pleased to see my favorite mental health site PsychCentral.com defend public crybabies like myself. Blogger Erika Krull writes of her own surprise crying jag during a day-long training session with her colleagues. The tears came while watching a nostalgic video of older people in the hospital.
I can spot Marty in a crowd a block away. He tilts left into the wind, as if he were shouldering the full blast of Hurricane Katrina, his arm gesticulating awkwardly. Once a well-dressed woman asked if I had seen "that man — I think he's drunk." I assured her the man was my husband. "He has Parkinson's," I told her.
We get that a lot — snickers, whispers. Looks that wound. "When people stare," Marty tells me, "I get nervous and shake that much more."
There are no rules of etiquette for dealing with a person who has a neurological disorder. Some people do stare; others recoil. Fortunately, though, many are genuine and forthcoming in their help. And that is as true here in New York City, supposedly the capital of heartless impatience, as it is anywhere in the country.
Marty has to take a combination of seven drugs eight times a day. He bought an expensive pillbox specifically made for Parkinson's patients; an alarm goes off when it's time to take a pill. One problem: the container is so difficult to open that when he finally succeeds, the pill is likely to go flying across the room or, worse, into the street.
Even when he's able to grasp the pill and take it, it may not last as long as he would like. "After a few years of taking medication, people with Parkinson's may begin to experience 'wearing off' spells," Dr. Lawrence I. Golbe, a neurologist at Robert Wood Johnson University Hospital in New Brunswick, N.J., recently wrote in the Parkinson's Disease Foundation newsletter, adding that for some patients the drugs may be effective for only three hours.
At home it's a minor inconvenience, though worrisome. Outside it's a potential disaster. Sometimes Marty's upper body moves but his feet stick, and he falls. Once a sergeant called from Penn Station. He said Mr. Sternberg was resting, just shaken up a little. "We'll send him home as soon as he's able," he said. Bless those men and women in blue.
One afternoon a young woman saw Marty leaning unsteadily against a street pole. She insisted on helping him. He insisted she didn't. She finally grabbed his arm, hailed a taxi and delivered him to our doorman, two blocks away. "Merry Christmas," she said with a smile.
A week later his pills gave out in front of Grand Central Terminal.
"Want to put a shine on those shoes?" an old-timer beckoned. It was sleeting; Marty was shaking. (Cold weather aggravates his tremor.) Did he need anything to drink or eat?
"Just some water for my pills. Thanks."
Why was he out on such a day? Marty showed him two simple gold wedding bands he had just bought for our 20th anniversary.
"It's a surprise for my wife," he said. "I could never wear a ring; my fingers were too thick. Now it seems I can."
Experts do say that Parkinson's patients burn more calories than other people. "If there's any consolation to this disease," Marty said, "it's that I can indulge in Ben & Jerry's Chocolate Fudge Brownie without guilt."
I have a sign taped on the inside of our front door listing vital items: pills, wallet, phone. Sometimes he forgets to look. The other day a saleswoman at Radio Shack tried to help a flustered Marty find his wallet.
"I know it was here," he said. "Maybe I dropped it on the street looking for my pills."
Before she could calm him down, he left under a black sky ready to burst with rain. Was it in the trash? No luck. We searched the apartment; it was on the closet floor. Perhaps we should have a sign reminding us to look at the sign.
The following morning he returned to Radio Shack. The saleswoman asked if he had found his wallet. He sheepishly admitted it had never left the apartment.
"Oh, yes," she said. "I prayed to St. Anthony for you, the patron saint of lost articles. He must have heard me."
I know I can be guilty of treating Marty like a child; impatience gets the better of me. "Hold on to the railing, pick your feet up so you don't trip, don't run for the bus. Be careful." These admonitions are taken with a grain of salt; after all, he is 13 years my senior.
"Don't make mountains out of molehills," he constantly reassures me.
Still, I hold my breath whenever he ventures out. But perhaps a little less these days — my fears of the city tempered by the grace and good will of its people.