They called him a quack, a wishful thinker, a glory seeker: Hypothermic cooling for Kevin Everett

On Oct. 26, 1985, 19-year old middle linebacker Marc Buoniconti suffered a severe spinal cord injury while making a tackle for his college team, Citadel. He has spent the last 22 years in a wheelchair. Two weeks ago, Buffalo Bills tight end Kevin Everett injured the same cervical vertebrae while making a tackle. Doctors say Kevin will walk soon – and he can thank Marc for it.

Marc's father is Nick Buoniconti – who had been a star as a pro football player himself. Nick decided to use his own fame to raise money for a cure. He and neurosurgeon Barth Green founded the Miami Project to Cure Paralysis, the world’s largest comprehensive spinal cord injury research center. They have raised more than $200 million for research; there are now 200 scientists, doctors, and researchers under one roof.

"They called [Dr. Green] a quack, the called him a wishful thinker, a glory seeker," Marc said.

The researchers worked for years on a hypothermia cooling technique that could limit damage, if applied quickly after the trauma. They publicized their findings in a seminar by the scientific director of the Miami Project, which was attended by the team neurosurgeon for the Buffalo Bills – Dr. Andrew Cappuccino. The treatment quickly lowers the victim's body temperature to 92 degrees Fahrenheit by using an ice-cold saline solution that prevents swelling and further damage, giving drugs a better chance to work.

On Sept. 9, Kevin Everett made a helmet-first tackle in the Bills' opening game. The initial reports said he had suffered a catastrophic, life-threatening injury, and would be paralyzed permanently.

But Dr. Cappuccino had acted quickly, ordering paramedics in the ambulance to immediately start running an IV with cold saline, less than 15 minutes after the accident. This was the first time the hypothermic treatment had been used so soon after a catastrophic injury.

"The results are amazing," said Dr. Green. "And because of it, Everett will walk again."

As Marc Buoniconti commented, "I dedicated my life to raising money and awareness for getting a cure. Little did I know that the decision I made in the hospital would lead to this."

Advice to grieviously injured patients and patient advocates: Consider if there is some way you can follow the lead of Marc and his father in creating and funding an organization aimed at finding a cure for Marc's condition.

Read another hero story of a patient engineeringihis own cure, or read more from Stan Grossfeld's article in today's Boston Globe.

A Yom Kippur Prayer on Behalf of the Sick

O Merciful God, we pray for the well-being of all who are ill.
Grant them enduring strength, and a sense of Your nearness.
Keep steadfast their faith and keep them from yielding to despair.
Grant wisdom and dedication to those who strive to bring healing and relief from pain.
Help those who share the anxiety which illness brings with it; help them to be brave and hopeful.
Grant us courage and confidence, and keep us ever mindful of those who are afflicted.
Accept our prayers, O Lord, on behalf of all those who seek You today.
Praised are You, O Lord, Healer of the Sick.

Before he raced off to work: Perceptive listening about ventricular tachycardia

Dr. Bernard Lown describes how he found "The Hidden Clue:"

A college president consulted doctors over a decade for ventricular tachycardia, a very serious heart-rhythm disorder. He had been hospitalized in many of this country's leading centers and more than a dozen different medications had been tried, all to no avail. On his first visit, I asked at what time of day the arrhythmia occurred. He responded that it was almost consistently in the morning, before he raced off to work. When questioned further, he stated that it happened between about 7:30 and 8:30 am.

After gathering more information, I told the patient that his problem would be solved if he set an alarm clock to 5:30 am and as soon as he awoke, took a double dose of an anti-arrhythmic medication before going back to sleep. Following this counsel for the next eight years, he was totally free of arrhythmia.

It is astonishing that no doctor had tried to identify the precise time the arrhythmia occurred. Taking a much larger total dose of the same drug at intervals around the clock, as he had been told to do, provoked many adverse symptoms without containing the arrhythmia. The reason for the failure was straightforward. His evening dose had dissipated by early morning. The morning dose was taken too close to the onset of the disordered heart rhythm for the drug to have reached an effective therapeutic blood level. Furthermore, he needed a higher dose at that time to prevent the arrhythmia from breaking through. No amount of technical wizardry could have resolved his difficult problem. The solution would never have been unearthed without the information the patient provided.

Frequently a patient not only tells what is wrong but provides information suggesting how best to manage the problem.

Advice to patient and patient advocates: Be sure you have a doctor who asks you enough questions to perceptively diagnose your condition.

Read more from Dr. Lown's essay, "The Hidden Clue," in The Lost Art of Healing.

Just keratosis: Skin cancer misdiagnosis

Donna Bischoff’s story

Many general practitioners (the article [“The Dark Side of the Sun” in the July/August issue of Stanford Magazine] suggested 40%) don’t correctly diagnose melanoma. My elderly aunt had a large carcinoma that was incorrectly diagnosed by a gerontologist as “just keratosis.” I specifically asked him if she should have a biopsy. He said no because he was 100% sure this was keratosis and was quite perturbed to have his diagnosis questioned. Six months later, my aunt saw a dermatologist who immediately knew she had an advanced malignant cancer.

Donna’s Advice: Patients must be proactive in their health care, and that of their loved ones. Doctors can be fatally wrong.

She walks nicely: Staph infection and payment for hospital errors

Virginia Harvey, age 47, broke two bones in her left ankle while stepping off a curb in Boston in 1996. She required two operations at Brigham and Women's Hospital. After the second surgery, her ankle became infected, in the hospital, she believes.

The staphylococcus infection ate away parts of her ankle and crept up her shin, requiring 26 additional surgeries, 15 of them at the Brigham. Eventually she switched to Beth Israel Deaconess Medical Center in Boston, where surgeons amputated her leg below the knee. The infection has caused other problems, for which she now takes medication.

Virginia testified last week on a bill now being considered by the Massachusetts Legislature (H.2226/S.1277), the Healthcare Transparency bill. She walks nicely, and you wouldn't guess that she wears a prosthetic leg and foot. That belies the suffering she has experienced over the years. In addition to her suffering are the bills: she has paid $18,000 so far out of her own pocket for the prostheses – which she will need to replace as she ages.

Insurance covered most of the cost of her care; the Brigham has not waived any of her bills. Insurers, of course, set their premiums so as to cover their payouts, so all Massachusetts residents are paying for the Brigham’s errors.

The vice president for clinical affairs for the Brigham's parent organization, Partners HealthCare, said he and his colleagues are now developing a policy on when to waive charges. Until then, he added, Partners' executives make decisions on a case-by-case basis.

Nationally, Medicare has recently formed a policy aimed at preventing hospitals from receiving payment for their errors, beginning in October 2008.

Advice to victims of medical error: Ask your state legislators if you can testify on bills to reduce medical errors. Tell your story there, and here.

Read about another patient's experience with a leg staph infection, or read more from Liz Kowalczyk's article in today's Boston Globe.

She battled for 50 years: Restless Leg Syndrome

A creeping and crawling sensation used to keep Sheila Connolly awake for hours, and she only felt relief by standing or walking.

"It took me a long time to find out what it was," she said. "My primary care physician did not know what I had. I was sent to one neurologist who knew what I had, but did not know how to treat it. Then I was sent to a third neurologist. This [occurred] over a course of many years."

Sheila, now 67, battled the disorder for 50 years. RLS is a disorder that disturbs a person's sleep pattern. It is often under- and misdiagnosed.

With about 12 million diagnosed cases in the U.S. alone, restless leg syndrome is slowly,but surely becoming a more widely recognized condition.

"Some people will get it once a year when they take a long plane ride, some women will get it only just before their period, some people will get it just if they are very tired," said Dr. John Winkelman, Director of Sleep Health Centers at Brigham and Women's Hospital in Boston. "And then there are people who get it predictably, who get it once or twice or four times a week or unfortunately even every night."

Doctors don't know exactly what causes RLS, though they know that certain dopamine levels, low brain-iron levels, and a person's genetic make-up are contributing factors.

Medication has helped to relieve Sheila's symptoms. Other patients find that changing their daily routines and being aware of certain triggers can help.

Advice: If you feel sure something is wrong, be persistent in looking for a diagnosis. A patient advocate may help.

Read another difficult neurologist's diagnosis story, or read more from the source article by Paula Rizzo.

Not “just the way it has to be:” Treatment of Hirschsprung’s disease

Matthew Swan is a third-grader with a rare and serious congenital condition called Hirschsprung's disease. It limits the ability of his large intestine to process food. Doctors near his Idaho home had told him to eat a high-fiber diet and use laxatives, which hadn't helped.

Matthew's mother couldn't find specialists near their home, and so had been taking him to a children's hospital in Michigan. But Matthew still got chronic intestinal infections that required frequent visits to the Emergency Room, and prevented him from attending full days of school.

"We were told that this was just the way it has to be," said his mother. She researched colorectal programs, spoke to other parents, and chose to come to Cincinnati Children's Hospital. Doctors there realized Matthew has an exceptionally rare form of the disease, and stopped the high-fiber diet and laxatives. They performed surgery and gave Matthew other forms of help to better control his bowel movements.

Staff at Cincinnati Children's Hospital see part of their job as helping each patient to live as normal a life as possible. That means helping patients like Matthew to remain continent. Not doing so would be a "glaring deficiency," in the words of Dr. Marc Levitt at CCH.

Advice to mothers: Matthew's mother was unwilling to accept the conclusion that nothing could be done. As a patient advocate, you should research alternative places to get treatment, and ask other parents, as she did.

Read more from Reed Abelson’s article in today's New York Times.

Some little room in her mind: Dependence on alcohol

From Caroline Knapp's memoir:

Nan Robertson wrote [in Getting Better], "I withdrew in subtle ways. My husband used to say, 'When Nan gets bombed, she goes off into some little room in her mind, and pulls down the shade.'"

That line stuck with me for many years….that image had to do with the places alcohol can take you. It had to do with transportation…taking psychic flight…leaving yourself behind….A liquid makeover, from the inside out.

Alcohol melts down the pieces of us that hurt or feel distress; it makes room for some other self to emerge, a version that's new and improved and decidedly less conflicted. And after a while it becomes central to the development of that version, as integral to forward motion as the accelerator on a car. Without the drink you are version A. With the drink, version B. And you can't get from A to B without the right equipment.

Advice to readers who drink: Find a person who can help you learn to get from version A to version B without alcohol.

Read another story of recovery from alcoholism, or read our source, Caroline Knapp’s memoir, Drinking: A Love Story.

Testimony on Massachusetts Legislation Allowing Clinicians to Apologize for Errors

The Massachusetts Legislature held hearings today on the Healthcare Transparency bill. Here is my testimony on a provision allowing clinicians to apologize for errors without worrying that the apology could be used against them in a lawsuit.

Thank you for the opportunity to speak.

I’m Ken Farbstein. As a consultant, I helped my multi-hospital system client win the $25,000 Premier award in hospital medication safety. I'm a father and husband, and have seen my father-in-law die from a fatal medical error, which was easily preventable. I coach patient advocates in my own business. I've documented 250 stories of medical errors, all preventable, on my blog, PatientSafetyBlog.com

I strongly support this bill. I'll focus on the provision that allows doctors and nurses to apologize for an error.

There are 4 reasons why it's vital to encourage apologies by doctors and nurses.

First, apologies will allow openness that will ultimately result in better understanding of how to prevent similar errors. Now, it's taboo to talk about errors, so they're hidden and doctors and nurses can't learn from them. They're ashamed, and they can be sued and fired, for admitting an error, so they don't. And they don't tell their colleagues how to prevent those errors. So other doctors and nurses make the same errors, with the same tragic results.

Second, allowing apologies will allow the victims of medical error to regain their trust in doctors and nurses. In the stories I hear from medical error victims, they often say that the lack of any apology adds insult to injury. It destroys their trust in their doctors and nurses. And they have to depend on doctors and nurses for the rest of their lives! It’s terrifying for a patient to know the doctor or nurse made an error, and won't admit it – it makes the patient think the same thing will happen again. Over and over we hear, "No one took responsibility!"

Third, apologies will help heal the "second victim" of the error – the clinician himself or herself. We can harness the energy from the shame and self-loathing that doctors and nurses feel, and use that to fuel their work in improving the treatment system. That's what we did at CareGroup; we got providers talking about their errors – that was crucial. Allowing doctors and nurses to apologize lets them take a step in that direction.

Fourth, apologies can cut healthcare costs. The lack of an apology is often the straw that breaks the camel's back, and motivates a victim to become a plaintiff in a medical malpractice suit. With genuine apologies, patients will feel less aggrieved, and less likely to sue their doctors and nurses. There may be lower malpractice payouts, and the savings could ripple through to patients and payers.

In conclusion, these apologies by doctors and nurses will reduce future similar errors, rebuild the trust of victims, help heal ashamed doctors and nurses, and may reduce costs.

Please ensure that this bill keeps this vital provision that lets doctors and nurses apologize without fear that the apology will be used against them in a lawsuit.

She ran a marathon while on chemotherapy: Incurable liver cancer

Jane Tomlinson, a mother of three, passed away on September 3 from liver cancer, seven years after hearing she had six months to live.

Weeks after learning of her terminal illness, she joined a gym. Two and a half years later, she became the first known person to run a marathon on chemotherapy when she completed her second London Marathon. The next year, she became the first woman with incurable cancer to complete an Ironman Triathlon – a 2.4 mile swim, followed by a 112-mile bicycle ride, and ending with a 26.2 mile marathon. Her final big challenge – another success – was to run from San Francisco to New York, last year.

Jane raised $2.5 million for charity.

Advice: Learn from Jane’s strength.

Read a happier story of an endurance athlete’s survival from cancer, or read Kate Kelland’s source story in the Sept. 10 issue of the Boston Globe.

Mischief in the waiting room at 4 am: Ideal micropractice

Kristy Dyer's story:

A year ago, my three year old woke us up screaming in the middle of the night. Not tantrum-screaming, bloody-murder screaming. We turned on the lights, picked her up, found the favorite blanket, and tried to hold her writhing body. After about 20 minutes, without so much as a pause for air on her part, we called our pediatrician's after-hours number. This connected us to a switchboard who asked us several questions (date of birth, weight, etc) who then transferred us to a pediatric-nurse hotline, who then asked the same questions. She unhelpfully suggested we undress her to see if we saw anything on her body (hard to do with a screaming-writhing kid), then confessed she had no idea what to do and we should probably take her to the emergency room "just in case". I asked which hospital to take her to. "The nearest one" she replied -- at which point I discovered that this nurse was in Wisconsin (we, and our pediatrician live in New Mexico). We bundled the now-naked screaming kid into the car and took off.

My daughter fell fast asleep in the car on the way to the emergency room. She stayed that way through the first two hours of our wait (I wasn't upset with the wait -- I was relieved she'd quit screaming and we certainly no longer looked like any kind of emergency) and then started causing mischief in the waiting room at 4 AM. Four hours after we arrived we gave up and went home, mostly exhausted but slightly uncomfortable about the lack of medical feedback that our kiddo was going to be OK.

The next day the assistant to the nurse who assists our doctor called us (evidently they keep track of who uses the rent-a-nurse line) to see if we were OK. She tentatively suggested it might have been gas(!) or a nightmare(!) but didn't know for sure, not being medically trained. She also didn't offer us an appointment or a phone call to discus it with the doctor. She had no idea that the after-hours line connected to somewhere out of state. We fired that pediatrician -- or rather her practice.

Friends of ours recommended a doctor they "really liked" -- little did they tell me this was going to be a life-changing experience for our family. The first indication was her receptionist telling us that the first appointment would be for an hour, and suggesting that it would be better if we were completely well at the time of that appointment. With an hour, our new doctor had enough time to listen and take a health-history, write out ongoing prescriptions, and discuss toddler ear-infection philosophies. She takes her own call, except when someone covers for her on vacation. Standard appointments after the first are for 30 minutes and can usually be scheduled in a few days. What I call "fit in" appointments are 10-15 minutes and are usually same day or next morning. These include single issue urgent items: can you look at the baby's ear? Does she have pink eye? This family doctor understands the dynamics of infection in a family using daycare, she can check all of our throats for strep, and is gently, gradually getting us to take better care of our heath -- stress reduction here, cholesterol there. The difference continuity of care makes is enormous. Here is someone I actually trust -- she's been there for me, she knows how I think about my health and she sets me challenges -- I'm actually doing yoga and walking, rather than just thinking about it. As a single healthy 20-something, medical care played a tiny part in my life, but now as a 36 year-old with a child, this makes such a big difference in our quality of life I can't imagine moving, unless she comes with us. Oddly enough this "quality of life" effect persists outside her office. Read something scary on the web? Don't worry, we'll print it out and take it to the next visit for her opinion. Baby has a fever on a Friday afternoon? No panic. We'll treat it with ibuprofen, and if she breaks out in Dengue fever on Saturday, our doctor will be there. Someone we trust, who knows us, will answer the phone.

I've been told you can get medical treatment of this quality in large cities such as Washington DC and Los Anglos, under the name of "concierge medicine"-- you pay an annual fee $1,000-$20,000 (completely unreimbursable under your health insurance). For this you get continuity of care, same day appointments that start within 30 minutes of their scheduled time, and the pager number of your doctor. The extra money allows the doctor to see fewer patients and run a smaller practice without losing income.

But what my doctor is doing is different. She's in a solo practice; she calls it "providing a medical home for her patients." She's part of a larger group that calls their goal Ideal Micropractice. They are participating in a study by The Physicians Foundation for Health System Excellence.

I asked her what this is like from her perspective. In the old office she used to see 20-25 patients a day, then chart for 2 hours, and answer calls. Now she sees 10-12 patients each day, giving her time to care for and enjoy her relationship with patients. Unlike a group practice she does her own chores. She cleans up after herself, answers most of her own calls, call pharmacies, orders medical supplies, calls to find lost labs, and fills in forms. However, daily, it takes no more time than charting, answering calls and taking call did at the group practice. (She protests "It is still too much time!"). Her solo practice works financially because the average overhead for a family practice office is 65-70%. She's cuts this to 25-30%. So despite seeing half the number of patients, she makes (only?) 20% less than she would in a local group practice. While her solo practice is doing well, she does worry that in the long run, her practice will get squeezed to death between rising costs and malpractice, rising demands by all insurance plans for more paperwork and lower or flat insurance payments. She says she feels like she walks a thin line each day between the number of patients she can care for well, and the financial costs. (Actually her worst complaint is that she has to administer shots herself to the babies -- a chore the nurses get to do in typical group practice.)

It's not just me that appreciates the quality of care. The first visit with a newborn/new mom always includes help with breast-feeding. Teenagers don't have to explain delicate health issues to first a receptionist, then a nurse, before they get to a doctor they know and trust. She says "A lot of them call me from college with crises and news." There are about 50-70 of these doctors in the US (in addition to the small town types who have known their patients well for years).

Do these people have anything in common? Does working solo actually imply a philosophy? In fact it they do seem to hold some common truths. They don't like medicine as it's being practiced -- they don't enjoy doing it and they don't think it's good for the health of their patients. While quality-of-care sounds like a throwback to small town family doctor days, they are pro-technology -- electronic records, evidence based medicine and surveys (in particular "How's Your Health") and determined to beat costly and debilitating disease by being proactive with patient behavior (note my walking and yoga...more than I've ever done for any other doctor).


Advice: Consider a physician with this kind of micro-practice.


Read a more grim healthcare access story, or read more from the source blog post by Kristy Dyer.

Pretty profound, huh?: DNR in the treatment decision at the end of life

In Margaret Edson's play, W;t the character Vivian is an independent, crotchety, cerebral English professor with Stage 4 ovarian cancer, and the character Susie is her nurse on the cancer ward in an academic medical center. Near the end, Susie brings Vivian an orange double popsicle to relieve her throat. Vivian breaks it in half and hands half to Susie.

Susie: Sure?

Vivian: Yes.

Susie: Thanks. [She sits.] When I was a kid, we used to get these from a truck. The man would come around and ring his bell and we'd all run over. Then we'd sit on the curb and eat our popsicles. Pretty profound, huh?

Vivian: It sounds nice.

[Silence]

Susie: Vivian, there's something we need to talk about, you need to think about. There just isn't a good treatment for what you have yet. I'm sorry. They should have explained this-

Vivian: I knew. I read between the lines.

Susie: What you have to think about is your "code status." What you want them to do if your heart stops.

You can be "full code," which means that if your heart stops, they'll call a Code Blue and the code team will come and resuscitate you and take you to Intensive Care until you stabilize again. Or you can be "Do Not Resuscitate," so if your heart stops we'll…well, we'll just let it be. You'll be "DNR." You can think about it, but I wanted to present both choices before [Dr.] Kelekian and Jason [the research Fellow] talk to you.

Vivian: You don't agree about this?

Susie: Well, they like to save lives. So anything's okay, as long as life continues. It doesn't matter if you're hooked up to a million machines. Kelekian is a great researcher and everything. And the fellows, like Jason, they're really smart. It's an honor for them to work with him. But they always…want to know more things.

It's up to you.

Vivian: Let it stop.

Susie: Really?

Vivian: Yes.

Susie: So if your heart stops beating…

Vivian: Just let it stop.

Susie: Sure?

Vivian: Yes.

Susie: OK. I'll get Kelekian to give the order.


Advice to patient advocates for patients at the end of life: If you need to have this tough conversation, Susie's kind words may provide an example.

You’re still going to take care of me?: Kindness in cancer care by a nurse patient advocate

In Margaret Edson’s play, W;t [Wit], the character Vivian is an independent, crotchety, cerebral English professor who has advanced ovarian cancer, and Susie is her kind, less educated nurse on the cancer ward. Near the end, Susie gives Vivian an orange popsicle for her raw throat.

Vivian: Susie? You're still going to take care of me, aren’t you?

Susie: 'Course, Sweetheart. Don't you worry.

Vivian, as an aside: That certainly was a maudlin display. Popsicles? "Sweetheart?" I can't believe my life has become so…corny.

But it can't be helped. I don't see any other way. We are discussing my life and my death, and my brain is dulling, and poor Susie's was never very sharp to begin with, and I can't conceive of any other…tone.

Now is not the time for, and nothing would be worse than a detailed analysis. Erudition. Interpretation. Complication.

Now is a time for simplicity. Now is a time for, dare I say it, kindness.


Read a story on compassionate nursing care at the end of life, or read W;t.

Drive across country without a map: Misdiagnosis & medical decision-making

The patient was a boy who was very ill with a severe childhood disease called hemorrhagic shock and encephalopathy syndrome. His doctor, Stephen Borowitz, says the boy had significant neurological damage and was fed through an intravenous feeding tube.

The immediate problem was that he had a fever. But he was showing other symptoms that didn't match his condition. "He had developed diarrhea, which is extremely unusual for him, and he seemed uncomfortable," his doctor said.

So the doctors consulted Isabel, a Web-based medical technology that generates a list of possible diagnoses based on the patient’s symptoms. The computer program suggested the doctor consider gallbladder disease, which he had not thought of.

An ultrasound was ordered, and gallbladder disease was indeed the problem, and it may not have been related to the boy's pre-existing condition or his feeding tube.

"The mind can't possibly deal with the complexity of the problem that a patient presents," Prof. Larry Weed says. "What if you said, 'Let's give (doctors) eight years of geography at Harvard and then let them drive across the country without a map'?" Dr. Weed, best known as the developer of the problem oriented medical record many years ago, has developed a similar medical diagnostic tool, the Problem-Knowledge Coupler. Such electronic tools can powerfully assist doctors in diagnosis.

Advice for patients with conditions that are difficult to diagnose: Find such a program, or a doctor who uses one, or use the online Mayo Clinic resource via the link in the Resources and Links section, below on the right side of this blog page.

Read another of our Isabel stories, or read Erin Donaghue's source story in USA Today of Sept. 6.

Thanks, Andrew Law.

People ask if she is British: Hearing testing

Hailey Ems was born weeks early, on the floor of an upstairs bathroom as emergency medical technicians tried to figure out how to get the stretcher upstairs.

She didn't meet the developmental milestones for the first year of life: crawling, standing, and speaking her first words. So doctors tested her for cerebral palsy and muscular dystrophy, but ruled them out. Finally, when she was 14 months old, her ten-year-old brother was the first to realize the truth, saying "I don’t think Hailey can hear."

Hospitals routinely test newborns' hearing. But even that is not a guarantee that deaf and hearing-impaired babies will get the necessary early treatment. Parents of one-third of babies who fail the initial hearing screening do not bring their babies back for a more rigorous test. "If a child isn’t fitted with a hearing aid until age 2, that is when he or she will have to start learning what sounds are. If we catch kids in the first few months, we don't see delays and they do beautifully," says Anne Oyler, an audiologist with the American Speech, Language and Hearing Association.

Hailey, now six years old, received hearing aids soon after her brother's diagnosis. By her second birthday, she had cochlear implants in one ear. Within months, she had reached her developmental milestones. She'll have a cochlear implant in the other ear too.

Now she's entering a local elementary school. The only thing that sets her apart from her classmates is a small speaker for her desk and a microphone that her teachers will wear to amplify the sounds of her lessons. "When she talks, no one knows that she is deaf," says her mother. "She speaks so perfectly that some people ask if she is British."

Advice to parents of young children: Get their hearing tested so medical technology can help them reach their milestones on time.

Read Jamie Talan's source story in the Sept. 4 issue of the New York Times.

Without questioning this intelligent woman: Angina misdiagnosis

From Dr. Bernard Lown on "Getting Doctors to Listen:"

One experience illustrates the mayhem wrought by self-diagnosis. Mrs. T., a woman in her mid-eighties, had been completely crippled by postural hypotension for the past five years. Each time she stood, dizziness and light-headedness caused a near faint. She became bedridden, burdening family and growing depressed as a result. She was on a bevy of drugs for angina that indubitably contributed to the drop in blood pressure when she stood.

On careful discussion, it was evident that this woman did not have angina; her chest pain was caused by arthritic and musculoskeletal problems.

I tried to determine how the diagnosis of angina had been arrived at, and the patient admitted to having suggested it to the doctor. Comparing notes with a friend who had experienced a recent coronary heart attack and suffered thereafter from angina pectoris, Mrs. T. grew convinced that her problem was identical. After further discussion with her sick friend, she absorbed some of the appropriate descriptive terms. On the initial visit she told the cardiologist that she was certain her condition was due to angina. The doctor, without questioning this intelligent woman, prescribed the usual anti-anginal fare. Since none of the medicines helped, more drugs were added on many subsequent visits. When she became totally disabled, Mrs. T. sought a second opinion from me. When all medicines were discontinued, the vertigo and the other symptoms disappeared, except for the chest pain, which she now took in stride.

There is no excuse for a doctor's not going beyond a patient's labeling of a problem. Nonetheless, caveat aeger, "let the patient beware.”"Avoiding the role of accomplice in self-victimization is a modest first step.

Advice: Be informed, but let the doctor make the diagnosis.

Read another happily ending misdiagnosis story here, or read more from Dr. Lown's book, The Lost Art of Healing: Practicing compassion in medicine.

Miracles reside in comforting and healing: Dr. Bernard Lown

Dr. Bernard Lown on healing without curing

Even when cure is impossible, healing is not necessarily impossible. The miracles reside in the capacity for comforting and healing.

This was brought home to me by Mrs. J., a well-composed, articulate woman in her mid-seventies. Over the preceding five years, she had become increasingly disabled with weekly paroxysms of atrial fibrillation, although a multiplicity of tests revealed a structurally sound heart. Several drugs tried singly or in combination were largely unavailing, and a number of them caused troublesome complications. The episodes of arrhythmia left her drained for days, and fear of unpredictable recurrences circumscribed her activities and kept her homebound. As I listened to her problem, it was eminently clear to me that no stone had been left unturned. I could think of no easy measures to effect a cure, and I was therefore astonished to hear myself express a certainty of resolving her problem. I did, however, leave a clever escape hatch by indicating that it would take time.

When Mrs. J. returned some months later, the problem was largely ameliorated. I was impressed with this remarkable turnabout, though the basis was self-evident. I had reassured her that the arrhythmia, while troubling, was not dangerous, and I had discontinued many of the drugs that were responsible for a host of symptoms previously ascribed to the heart. She was now able to sleep through the night, and with more sleep, arrhythmic recurrences were reduced in severity. I had prescribed a larger dose of digitalis whenever a paroxysm did emerge, so her heart rate during the arrhythmia was slowed and the bout became more tolerable. While the fundamental problem remained unresolved, she was able to resume a normal lifestyle.

Yet I could not give myself credit for the outcome. The patient herself had largely effected the extraordinary change. She could be helped because she had become reconciled to an improvement rather than a cure. She welcomed small changes for the better and was ready to exploit these to the hilt. I could expeditiously come to grips with essentials because she was sharply focused and not hypochondriacal.

If a patient is ready to be helped, even a little, and grateful for the marginal, it enhances the doctor's commitment to fostering a relationship between equals. Only such a relationship, bonded by understanding and respect, can deepen into a true healing partnership. This encourages, in the words of Lewis Thomas,
"the capacity for affection," the essential element for healing.

Advice to patients: Be ready to be helped, even if a cure is not possible.

Read a story on physician/patient rapport, or read Dr. Lown’s book, The Lost Art of Healing: Practicing compassion in medicine.

He waited to be rescued: Lance Armstrong’s definition of courage

Lance tells this joke in his memoir:

A man is caught in a flood, and as the water rises he climbs to the roof of his house and waits to be rescued. A guy in a motorboat comes by, and says, "Hop in, I’ll save you."

"No thanks," the man on the rooftop says. "My Lord will save me."

But the floodwaters keep rising. A few minutes later, a rescue plane flies overhead and the pilot drops a line.

"No thanks," the man on the rooftop says. "My Lord will save me."

But the floodwaters rise ever higher, and finally, they overflow the roof and the man drowns.

When he gets to heaven, he confronts God.

"My Lord, why didn’t you save me?!" he implores.

"You idiot," God says, “I sent you a boat, I sent you a plane.”

In a way we are all just like the guy on the rooftop. Things take place, there is a confluence of events and circumstances, and we can’t always know their purpose, or even if there is one. But we can take responsibility for ourselves and be brave.

We each cope differently with the specter of our deaths. Some people deny it. Some numb themselves with tequila. I was tempted to do a little of each of those things. But I think we are supposed to try to face it straightforwardly, armed with nothing but courage. The definition of courage is: the quality of spirit that enables one to encounter danger with firmness and without fear.

Read one of our athlete hero stories, or read more from It’s Not about the Bike.

He was the poster child for the Muscular Dystrophy Association: Michael Spencer

Michael Spencer, 33, was diagnosed with muscular dystrophy when he was 4, started using a wheelchair at 9, and lived a full life that inspired others. Twice he was a poster child for the Muscular Dystrophy Association (MDA).

Michael died Saturday in his Lorain, Ohio home, of respiratory failure that was a complication of his disease, said his mother, Gladys. He had duchenne muscular dystrophy, a neuromuscular disease in which muscles become progressively weaker, she said.

In 1981, he was the Ohio Poster Child for the MDA, and in 1982 was named the Northeast Ohio MDA Poster Child. He made many television appearances and was involved in several community projects to help raise money for the MDA.

He was 6 when he participated in several MDA "boot drives" conducted by Lorain, Ohio firefighters. One year he traveled to Washington, D.C., with his family and helped firefighters there with an MDA boot drive.

At 17, Michael received the Northeast Ohio MDA's Personal Achievement Award on March 25, 1992. The award recognized him for his accomplishments and inspiration to others afflicted with any of the 40 neuromuscular diseases.

Advice: Telling your story publicly, like Michael did, can help others with your disease.


Read one of our stories on a survivor of Lou Gehrig’s Disease, or read more from the source article in the Cleveland Plain Dealer by Wally Guenther on August 29.

My illness was starkly revealing: Cancer survivor Lance Armstrong

Lance's realization:

My illness was humbling and starkly revealing, and it forced me to survey my life with an unforgiving eye. There are some shameful episodes in it: instances of meanness, unfinished tasks, weaknesses, and regrets. I had to ask myself, "If I live who is it that I intend to be?" I found that I had a lot of growing up to do as a man.

I won't kid you. There are two Lance Armstrongs, pre-cancer, and post. I returned a different person, literally. In a way, the old me did die, and I was given a second life. Even my body is different, because during the chemotherapy I lost all of the muscle I had ever built up, and when I recovered, it didn't come back in the same way.

Cancer was the best thing that ever happened to me. I don't know why I got the illness, but it did wonders for me, and I wouldn't want to walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?

Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour [de France], because of what it has done for me as a human being, a man, a husband, a son, and a father.

Read another of Lance’s stories from his memoir, It’s Not about the Bike.

You have to believe, and you have to fight: Cancer survivor Lance Armstrong on courage

When I was 25, I got testicular cancer and nearly died. I was given less than a 40% change of surviving, and frankly, some of my doctors were just being kind when they gave me those odds.

Children [with cancer] have the ability to ignore odds and percentages. Maybe we can learn from them. What other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.

After I was well again, I asked Dr. Nichols what my chances really were. "You were in bad shape," he said. I was one of the worst cases he had seen. I asked, "How bad was I? Worst 50%?" He shook his head. "Worst 20%?" He shook his head again. "Worst 10?" He still shook his head. When I got to 3%, he started nodding.

Lance's Advice: Anything's possible. You can be told you have a 90% chance or a 50% chance or a 1% chance, but you have to believe, and you have to fight. By fight I mean arm yourself with all the available information, get second opinions, third opinions, and fourth opinions. Understand what has invaded your body, and what the possible cures are. It’s a fact of cancer that the more informed and empowered patient has a better chance of long-term survival.

People live, and in the most remarkable ways: Lance Armstrong, cancer survivor

Lance Armstrong on heart:

People die. But there is another truth, too. People live, and in the most remarkable ways. When I was sick, I saw more beauty and triumph and truth in a single day that I ever did in a bike race – but they were human moments, not miraculous ones. I met a guy in a fraying sweatsuit who turned out to be a brilliant surgeon [Dr. Scott Shapiro]. I became friends with a harassed and overscheduled nurse named LaTrice [Haney], who gave me such care that it could only be the result of the deepest sympathetic affinity. I saw children with no eyelashes or eyebrows, their hair burned away by chemo, who fought with the hearts of [five-time winner of the Tour de France Miguel] Indurain.

Advice: Read Lance Armstrong’s book, It’s Not about the Bike: My Journey Back to Life.

Read another athlete cancer survivor story.

The neurosurgeon relied on memory, not the CT Scan: Wrong site brain surgery

An 86-year old man, who has not been identified, came to the emergency department at a hospital in Rhode Island on July 30 with increasing lethargy three days after a fall. A CT scan indicated he had bleeding on the left side of his brain, and he was transferred to the operating room for surgery to drain the blood.

A nurse practitioner did not record which side needed surgery in the patient’s medical history nor on the consent form signed by the patient’s relative.

When a different nurse — a circulating nurse in the operating room — pointed out that the information was missing, the surgeon wrote down the side where he would operate on the consent form.

The surgeon didn’t confirm his memory by checking the CT scan, health inspectors found. He wrote down the wrong side on the form, and then cut open the wrong side. When he realized his error, he operated on the correct side.

The patient 86-died Saturday, and the medical examiner's office is still trying to determine whether the surgical error contributed to his death.

The hospital's chief quality officer said that the staff's sense of urgency about caring for the patient had superseded the rules.

Of course, as the quality officer added, emergencies are "exactly where policies and procedures need to be as tight as possible."

Cooper said that she believed someone in the operating room had questioned whether the correct side was being cut, but the surgeon was confident he was right.

Advice: Elderly hospital patients should bring an advocate.

Read another wrong side surgery story, or read more from the source article by Felice Freyer in the August 24 issue of the Providence Journal.

She opened a laundry to support her hotline: Recovery from addiction

Wu Xuemin, a 40-year-old woman in Baotou City, in the Inner Mongolia Autonomous Region, was sent to a local agency to have treatment for her drug addiction.

Three years later, she has been successfully running a special hotline to help other addicts.

"When I was first in the anti-addiction clinic, my whole body ached, and I seemed to have a thousands ants crawling over me," she recalled.

Wu conquered her addiction with the help of the police officers and her roommates at the center. Afterward, she pledged to start a new life by helping other drug addicts to cure their habit.

The former addict opened a hotline called "Xuemin Chat Room" to talk with addicts and their relatives. The hotline received hundreds of calls in the first year.

When the local authorities heard that Wu had run into financial difficulties in running the hotline, they helped her by providing a new office and a computer. Wu has also opened a laundry to support her hotline and to give former addicts a job.

"I hope more and more brothers and sisters who want to give up their addiction will get in touch with me," she said, "I will spare no effort to help them."

Advice: Spare no effort to help your friends struggling with addiction, like Wu Xuemin has.

Read one of our addiction recovery stories, or read more from the source article from the Xinhua News Agency.

I never needed it in the first place: Unnecessary surgery - C section

When Barbara Stratton of Baltimore, Maryland, looks back at the birth of her son, Charlie, now 7, she’s angry — angry she had a surgery she believes she didn’t need. Babies delivered by C-section are at higher risk for complications, including breathing problems. Barbara said her obstetrician induced labor a week before her due date because she feared the baby would be too large to deliver if they waited for her to go into labor spontaneously. But even after being induced, her labor still didn’t progress, and she ended up with a Caesarean section. Her baby weighed 8 pounds, 7 ounces — far smaller than the obstetrician had predicted.

"I never needed the C-section in the first place," said Barbara.

The U.S. government and many obstetrical experts are working hard to reduce the number of women having C-sections. In 2004, 29% of babies in the U.S. were born by C-section, an increase of more than 40% since 1996. C-sections involve risks to the mother, including infections, bleeding, and pain. Babies born via C-sections have more breathing problems right after birth, according to the Office on Women's Health at the U.S. Department of Health and Human Services. Many experts think as many as half of all C-sections are unnecessary, the women’s health office said.

Barbara said that because of surgical complications she was in pain every day for a year and a half after her son was born. She became depressed.

"I was in pain every time I rolled over, every time I got out of bed, every time I got out of a chair," Barbara said. "It affected the quality of my mothering. I had trouble bonding with my son."

After her own disappointing birth experience, Barbara became a doula - a birth assistant who can advocate for a woman in labor.

Advice to pregnant women: Don’t get induced unless medically necessary. Studies of first-time moms show that 44% of those who are induced end up with a C-section but that only 8% of those who go into labor spontaneously end up with a C-section. Doctors say many times, inducing women way before the cervix is ready can lead to unproductive labor, which then necessitates a C-section.

Read a sextuplet story, or read Elizabeth Cohen’s source story.

Now he looks for another kind of high: Crystal meth recovery

Joe Duavit says he turned to crystal meth, or speed, in college to help study for exams. But the powerful upper also gave him a high, and an addiction that consumed him. He began to steal from his family to support his habit, going on binges that would last for days. "I ended up in a straitjacket in a psychiatric ward," says Joe, who in 1992 finally conquered his addiction. He then went to work for Habilitat, a drug treatment center in Kaneoho, Hawaii. The urge to take the drug again was the most difficult part of the recovery process, Joe says.

New research may help explain why drug abusers struggle so much with the compulsion to take such a risky drug again and again. A scientific study now suggests that compulsion can be traced back to damage to a part of the brain involved in making good decisions. Yet people such as Joe do recover -- often with the help of therapy. Studies also now suggest that the brain may heal itself after a person stops abusing a drug, a finding that indicates that recovery may get easier as time goes on.

Joe didn't notice any memory problems after he quit meth. But he did have to learn how to take pleasure in things that many people take for granted. He says he had to learn how to get satisfaction from working hard toward a goal, such as getting a college degree. And, over time, Joe did experience a healing, in his case one that freed him from a seven-year addiction to meth. Now as a drug treatment counselor, he looks for another kind of high, one that he gets from helping others break free of drug addiction.

Advice to people struggling with addiction: Look for a better high in helping people, like Joe did.

Read another of our addiction recovery stories, or read Dr. Don Miller’s source story, from the USA Today of April 18, 2002.

The day after my operation, my work in patient advocacy began: A prostate and kidney cancer survivor

Winston Dyer's story:

On May 17, 1995, I underwent a radical prostatectomy to remove my prostate gland at Long Island College Hospital in New York City. The next day, my work in patient advocacy began from my hospital bed with my first radio interview. My friend, who is a host on a Caribbean radio show, called me while I was in the hospital to see how I was doing. While we were on the phone, we decided to go on the air and answer questions from listeners about prostate cancer and promote awareness of the disease. I quickly became the go-to guy for Caribbean men all over the city who are experiencing prostate problems.

Now I'm a 12-year prostate cancer survivor and a six-year kidney cancer survivor. I'm the founder and chairman of Arianna Prostate Cancer Community Outreach.

There isn't a rule book on how to be a patient advocate. Each case is different, so there's no set pattern to follow. One kind of patient advocate is someone who offers assistance to patients to improve their care and quality of life. It means being there for people and supporting them in the best way you can. As you begin this work, you'll learn how to best advocate for others.

Winston's Advice: Your advocacy has to come from your heart.

1. Take advantage of every opportunity. When someone asks you to talk about your experience with cancer, take that chance to raise awareness or help a patient. For instance, three months after my surgery, my urologist, Ivan Grunberger, asked me to speak to a newly diagnosed prostate cancer patient. I visited his house, where I met his wife and answered many questions the couple had about the disease and life after prostate cancer.

2. Make yourself available. Accompany patients to their first doctor visits. As a survivor, you can help explain what the doctor is saying and even ask questions the patient may be afraid to ask.

3. Be patient and understanding. A person who is scared by a recent diagnosis may ask you many questions, at all hours of the night. If possible, you may want to have a separate telephone number for your advocacy work.

4. Help dispel myths. Some patients may have misconceptions about cancer and its treatment. Provide them with information to help separate fact from fiction. Also, encourage participation in clinical trials, which may afford patients greater access to state-of-the-art therapies.

5. Network and make connections. The relationships you build with medical experts will benefit you when you’re helping patients. Get to know the physicians in well-known institutions. Pick their brains and ask them to go over a case history. It's also important to create warm relationships with the staff in a hospital's financial aid office. You’ll need them when representing the poor and uninsured.

6. Get involved in support and advocacy organizations. This is a must for those of us who are interested in advocacy. You'll be a better patient advocate by volunteering in a leadership capacity in a support group or other organization. I worked at CaPCURE for several years, which is an organization that funds prostate cancer research; it's known today as the Prostate Cancer Foundation.

Read another of our cancer survivor stories.

Thanks to our source, Kathy Meade of the Prostate Cancer Advocacy and Action blog.

Son of privilege: Moyers’ book on addiction and recovery

William Cope Moyers has just published Broken: My story of addiction and redemption.

Readers disagree greatly about it:

Gladys' review:
Broken educated me about the addict, what living as an addict must really be like. As the parent of an addict, I read Broken with horror and frustration, but finished it with hope. Moyers' position on treatment and addiction as the misunderstood disease made me want to become an advocate for helping change attitudes and stances about the disease of addiction in the medical and insurance arenas.


From Stephen’s review:
God bless anyone who, one day at a time, keeps in remission the terrifying fatal disease of cocaine addiction! This memoir, at times gripping and moving, is so full of grandiosity and self-congratulation that one is left wondering about the motives for its publication. It would seem less likely to be a clarion to change public perceptions of alcoholism and drug addiction as a "look at me--whee!" account of a spoiled son of privilege whose errant lifestyle led him to a vaunted executive position at Hazelden, one of the most prominent alcohol and drug rehabiliation centers in the world!

J. Siri's review:
Even though there were many relapses William Cope Moyers did what he had to do to stay clean and sober. It is a great success story of recuperation, love and patience.

I am particularly surprised by his wife, who I believe gave him all the support needed. She really understood that it is a disease, not just an addiction. Congratulations! You are truly an inspiration to all!


From Margaret's review:
It was riveting on many levels. However…how is it that a person with fragile sobriety (3 relapses) of such short duration (1 year) lands an executive position with a high profile recovery program (Hazelden) he could not successfully complete? Could it be his last name? (Thanks, Dad!) And shame on Hazelden too, if the facts are as Moyers relates: he knew nothing about policy, but they gave him an interview anyway. Has that happened to you in your chosen field lately?

Advice: Let’s read the book.

Read another story of recovery from addiction, or read the reviews at Amazon.

She saved the lives of her twins: A misdiagnosis, cerebral palsy and dopa-responsive dystonia

When Joe and Retta Beery welcomed Noah and Alexis into the world 11 years ago, the babies seemed as healthy as their older brother. But within a year, they were diagnosed with cerebral palsy. As time passed, the children progressively became sicker and weaker. Retta became convinced that Noah and Alexis had something other than cerebral palsy, a non-progressive disorder that affects muscle control and is often linked to prenatal brain damage.

The doctors disagreed. But Retta began spending several hours a day poring through medical literature, looking for a name for the disease that robbed her children of sleep, turned their muscles into rubber bands and caused them to cry incessantly and vomit regularly.

"I had been doing my own research for two to three hours a day for several years," Retta said. "I came across an article about a rare disorder that is often misdiagnosed as CP."

Alexis, who suffered more severe symptoms than Noah, experienced dramatic developmental regression. By age 5, she had trouble walking, sitting and swallowing. Her body stiffened with tremors and her eyes vacantly rolled backward, all classic symptoms of dopa-responsive dystonia, a treatable genetic condition caused by a dopamine deficiency in the brain. Dopamine-deficient brains are unable to transfer nerve impulses between nerve endings and have difficulty converting thoughts into actions.

Specialists were hard to find. Retta located the doctor quoted in the article and took the kids to Chicago to visit him. He promptly confirmed Retta's suspicions and gave the twins Sinemet, a drug that stimulates dopamine production. Within hours, Alexis' muscle control radically improved and the little girl who was hidden behind the contorted movements began to emerge. Noah, too, saw remarkable improvement shortly after taking the drug.

These days, they are normal fifth-graders, thanks to daily doses of dopamine-stimulating medication.

"They're doing everything now," says Retta. "Noah has been playing baseball and doing well academically. And Alexis beat the elementary school track record for the 100-meter dash last year. She loves to run."

Retta, who calls the transformation a miracle, is promoting awareness of the disorder, which she suspects may not be as rare as doctors think. Since an article appeared in Woman's World in June 2006, Retta has received calls from as far away as Canada from people with similar symptoms. She has spent countless hours sharing information about the disorder and treatment, which she says can be tricky.

"I've had a lot of opportunity to reach out to people who have been misdiagnosed and share our hope with them."

Now her discovery has ignited a passion to help others with the same rare disorder. Their story will get national media exposure again as the focus of Discovery Channel's Mystery Diagnosis. The episode will air at 10 p.m. Sept. 3 and will be repeated throughout the week.

For more information about the Beerys and dopa-responsive dystonia, visit www.thebeerys.com.

Advice: If you doubt the doctor's diagnosis, you can investigate other possible diagnoses, e.g., here.

Read another girl’s misdiagnosis story with a happy ending, or read Susanne Tso’s source story.

I never thought I could: A drug court graduate

Trisha Nudd, 30, had struggled with an addiction to crack-cocaine for years before she took an opportunity to become sober in Angelina County Drug Court 2 1/2 years ago.

On July 19 she accepted a certificate of completion from the program, along with four others, marking a continuous year of sobriety. Trisha offered other participants in drug court who are struggling with addiction advice on what helped her get through hard times. She said her experience in drug court not only helped her stay off drugs, but give birth to a healthy girl a year ago, address other addictions and develop a personal relationship with God.

"I never thought I could," she said.

Angelina County Drug Court coordinator state district Judge Paul E. White runs the drug court. Trisha credits him for her success, among others.

Trisha's Advice: "You have to be honest with yourself and step up to the plate and get help."

Read one of our substance abuse recovery stories, or read more from the source article by Jessica Savage.

The midwives’ traditional methods were superior: Infant mortality and medical error

Midwife Filomena’s (CNM - Certified Nurse Midwife) story:

I had returned to Brazil after receiving my public health degree in the U.S. I was invited by the Organization of Indigenous Nations in Brazil to assist in organizing a health training for indigenous health agents in the south west Amazon in efforts to help reduce the rate of infant mortality in those communities. For the most part, these communities were healthy– they farmed their own food, did not use refined sugar, had plenty of game and fish and clean water. Nevertheless, many of their newborns were dying, and we had to find out why.

I discovered that scissors had been introduced there recently, and were highly prized as something new – shiny, sharp, metal, with many uses. Midwives had now begun using scissors to cut newborns’ umbilical cords. But they had no concept of Western germ theory or sterilization as we understand them, and anyway, it’s not so easy to find rubbing alcohol to sterilize scissors in the middle of the rain forest! In earlier times, midwives had used a special shell, sharpened long and carefully against a whetstone, to cut the umbilical cord. The slow grinding of the shell’s edge creates enough heat and friction to kill and remove bacteria, allowing for safe use by the midwife. Specific herbs were also placed over the cut umbilical cord to promote further healing. It was evident that the more modern use of the non-sterilized scissors caused tetanus infections that proved fatal. After we taught the midwives that their traditional methods were superior, their infant mortality rates improved greatly.

Advice: Remember that modern technology often may prove less effective than traditional methods.

I went wherever help was available: Recovery from addiction

Shivakumar’s story

I am a 37 year old recovering drug user. When I was 19, my friend and I had a road accident in which I broke my left hand. I was hospitalized at the same hospital where I was working. The pain was unbearable so the doctor gave me an intramuscular injection. For three hours there was no pain and the drug was giving me some high – which I was enjoying! When the drug wore off, I started feeling pain again, the high was gone, and my addictive personality was calling for me to take one more shot without the doctor’s knowledge. So I raided the hospital storeroom and took another injection.

For three years, I kept taking injections. My physical condition deteriorated to the point where I couldn’t perform my duties. Being around drugs at the hospital on a daily basis didn’t help, I came to realize, so I decided to move on.

Once out of work, I started to mingle with brown sugar users and very soon, I got hooked to it and cannabis. My drug use landed me in a local jail three times. It was there that I became ashamed of myself. I wanted it all to end. So I loaded a barrel full of drugs hoping for a last dying trip.

When I came to, I was in a hospital. After a few days, I was released and I started using again. I injected for six months but, this time, my family came to help me. They took me to TTK Hospital, where I enrolled in a three-month treatment program.

It didn’t take long for me to relapse. Again, the downward spiral which led to my second suicide attempt. After that, I went back to TTK and cleaned up my act, went to self-help group meetings where I got strength and hope and I went wherever help was available. With God’s grace and the precious help I found at TTK, I am recovering from drug dependence, staying away from all drugs for more than ten and a half years now, and still attending the self-help meetings on a daily basis.

Since I beat my addiction, I have been working at TTK’s Outreach Center for six and a half years as the buprenorphine project coordinator. My work and the pharmacotherapy allow people to get jobs, enjoy their family lives and maintain decent social relationships.


Advice: Look for ways to apply what you have learned the hard way to help others, as Shivakumar is doing.

Read a sad story about problem drinking, or read Shivakumar’s source story.

To say I was amazed would be an understatement: Infant’s fever treatment

Michele O’Donnell’s story
My baby daughter Linda was quite prone to fevers, and it was one of those incidents that led me to call on the help of a far wiser and more mature woman than myself. My request was that she accompany me to the doctor’s office, but her response was something that I never imagined. She said that she would come right over and take me if I would do something while she was on her way. She told me to kneel next to Linda (who was lying on a beanbag on the floor, bright red and burning up with fever) and place my hands on her head and quietly and calmly tell the fever to leave her. Quietly and calmly was certainly the key here. If I remained in the frightened and agitated state which I was in when I called for help, I could not have accomplished this. As long as I was giving the appearance such power by my fearful reaction, the problem would remain. I was playing victim to the situation, having no idea the power available to me to correct it. At first I thought she was kidding me, but when I learned she was not, I said I would “try it” so long as she still was on her way to get us and go for real help if it didn’t work. As soon as she hung up, I did exactly what she requested. I found that if I sang a song or two for Linda first, we both would calm down. Within minutes after singing the songs and telling the fever to leave, it was gone. Usually when a fever breaks, the patient begins to perspire profusely, but this she did not do. It simply was not there anymore. When my friend arrived, everything was calm and under control. To say that I was amazed would be an understatement.


Michele’s advice: Suffering, while it comes as a physical entity, does not necessarily need to be dealt with on that level. We are not in a helpless state when faced with it.

Read one of our baby stories with a happy ending, or read more from Michele Longo O’Donnell’s book, Of Monkeys and Dragons: Freedom from the Tryanny of Disease.

Do Not Suffer from Ailments You Cannot Afford: Recommended behavior for patients

Here’s Fortune Cookie #131,335:

A CODE OF ETHICAL BEHAVIOR FOR PATIENTS:

7. PAY YOUR MEDICAL BILLS PROMPTLY AND WILLINGLY.
You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.

8. DO NOT SUFFER FROM AILMENTS THAT YOU CANNOT AFFORD.
It is sheer arrogance to contract illnesses that are beyond your means.

9. NEVER REVEAL ANY OF THE SHORTCOMINGS THAT HAVE COME TO LIGHT IN THE COURSE OF TREATMENT BY YOUR DOCTOR.
The patient-doctor relationship is a privileged one, and you have a sacred duty to protect him from exposure.

Advice: A cup of tea and a funny fortune cookie are good for your health.

Read our April 1 post, or read other fortune cookies from our source.

That's when I can do the relationships: Innovative dentist-patient rapport

An interview with my wonderful dentist, A. Nonnie Mouse, DMD

Why do you have so many posters and cartoons on the ceiling?

At first, I put things on the wall. I asked a patient what they thought: “But the ceiling is where we spend most of our visit, looking up there.” But that’s daffy!, I thought. I went into a restaurant, saw the blue ceiling and stars, and I noticed that kind of thing at other restaurants too. Maybe in my practice it’ll be considered classy, like in the restaurants!


Why do you hand patients your own home-made educational materials at the end of the visit?

A patient told me, “You have a lot of good ideas [during the visit] but I don’t remember anything!”

So I developed a newsletter, that I write about two times a year [about oral health and wellness]. That’s what I hand out to patients, basically as an expression of my own craving for health and sanity. Because there are little ripples – for example, if you smile at somebody, it could make their day; who knows how it will ripple out? It may make a big difference in somebody’s life.


How’d you come to have patients listen to music they like during visits?

Early in my career, it just felt so good. I felt it would be an alternative to injections and all the stuff we do that’s intrusive. I must have picked it up through a personal experience, and it resonated.


Why do you do your own cleanings? I’m sure you give up some money by doing that.

It just came. That’s when I can do the relationships; I like that a lot. When people want to connect with me especially during check-ups, they share their feelings with me and me with them. I like that. If I share personal experiences, I feel good, and I get a lot out of it.

But when I do fixing, I don’t talk much—restorations, crowns, bite balancing - the reconstructive, repair part of dentistry - I’m a different person, in my own world.


What are your favorite days?

Check-ups, because I like people to become healthy, and I can shmooze more with check-ups. It’s fun.


My brother was seven years younger than me. He almost dropped out, because he had encephalitis. He felt abandoned, and almost died, but he came back. I had the same feeling of abandonment during my early years. Several years later, I thought, if I can help my brother to make it, that will be fine. That’s an underlying feeling. I won’t be truly healthy in this lifetime, but if I can help others to do that, that will be fine. That’s delightful to me; my presence is worth it. That, and sharing love, will make my life worthwhile.

He bolstered the lives of others: Terminal cancer

Norman Cousins: The judge's story

A physician in Sherman Oaks telephoned and identified himself as Dr. Avrum Bluming. He was calling about his patient, a judge, who was in the terminal stage of cancer and who was then at the Encino Hospital. He said the judge's mood was understandably bleak. All of his personal and professional life he had been known for courage, determination, and a positive outlook on life. His illness, however, had given him the psychology of fatalism. He told his wife and children that there was no hope and that he expected to die very soon.

Dr. Bluming told me that the effect of the judge’s mood on the family was catastrophic. He said that the judge's seeming willingness to give up without a fight was totally out of character. They physician was worried that the judge's wife might be vulnerable to serious illness.

On the way to the airport for the flight to China, I stopped off at the hospital. Before entering the judge's room, I met with Dr. Bluming, who told me that the judge had virtually stopped eating and was resisting intravenous feeding. At the present rate, he said, it was doubtful that he would survive more than two or three days.

When I entered the room, the judge bade me sit close to the bedside. He spoke in a hoarse whisper and it was difficult to follow what he was saying, but I picked up enough to learn that he had been a long-timer reader of the Saturday Review and had sympathetically followed its various enthusiasms and concerns.

I took his hand and thanked him and told him that few things in my life were more gratifying than to meet readers of the magazine. I asked how he felt. He closed his eyes and shook his head.

I said that Dr. Bluming had given me a briefing on his condition and that I was also concerned about his wife and sons and in fact, about all the people who loved him.

His eyes narrowed in a way that indicated he wanted me to explain myself. I said I understood that all his life he had been a fighter for things he had considered just and right.

He nodded and again he narrowed his eyes as though to find out what I was getting at.

I said that one of the things I had learned at the medical school was that attitude of the patient had a profound effect on members of the family. Their health could be jeopardized by negative attitudes of the patient. I said I hoped he would forgive me if I said that his family was anguished by the judge's apparent defeatism. Such defeatism might seem natural in anyone else, but in the judge…

The judge closed his eyes momentarily. Then he looked at me and uttered just two words: "I gotcha."

The sense of purpose in his whisper was unmistakable, as was the pressure of his handshake before I left.

When Ellen and I arrived in Hong Kong, the first thing I did was to telephone the hospital. Dr. Bluming went out to the nurse's station to take the call.

"Something is happening there that you’ll find difficult to believe," he said. "When the nurse began to rig up the intravenous device, the judge demanded that he be given breakfast on a tray. This was done. He got the food down, and kept it down. How he did that I'll never know. When his wife arrived, he called her to the bedside, then invited her to work on problems that come up in bridge games. The judge used to be a tournament bridge player. Where he got the energy to concentrate on bridge, I have no idea.

"This isn’t all," he continued. "After bridge, he asked for a robe and slippers, got out of bed, and went to the bathroom on his own. When the nurse tried to restrain him, saying she wanted him to use the bedpan, he waved her off and said he could take care of himself. He was crusty and strong-willed—just the way people had always known him."

I asked if this was any indication that the underlying situation had changed.

"Not as far as I can tell but it sure has made a difference in the lives of his wife and children. He’s going to survive this weekend and then some."

After I arrived in China, we were escorted into the interior of the country where international telephone facilities were not readily available. It was not until two weeks later, when we arrived in Shanghai, that I was able to telephone the hospital again.

This time, the judge’s wife went out to the nurse's station to take the call. Her voice was strong and cheerful

"The judge's spirits have been wonderful," she said. "He has had good talks with our sons. He follows the newspapers and makes his usual witty comments. He now takes walks in the hospital corridors and chats with other patients. The ultimate outlook hasn't changed, but the general atmosphere has. We are…well, a lot less dependent than we were."

The judge survived for several more weeks. It was a magnificent example of how the human spirit could make a difference-not just in prolonging one's life but in bolstering the lives of others. The judge's deep sense of purpose didn't reverse the disease—the cancer had spread so widely to his vital organs that it was only a question of time before it would claim his life. But he was able to prolong his life beyond the expectations of the physician. He was also able to govern the circumstances of his passing in a way that provided spiritual nourishment to the people who loved him. He died in character. This was his gift to everyone who knew him.

Hope, faith, love and a strong will to live offer no promise of immortality, only proof of our uniqueness as human beings and the opportunity to experience full growth even under the grimmest circumstances. The clock provides only a technical measurement of how long we live. Far more real than the ticking of time is the way we open up the minutes and invest them with meaning. Death is not the ultimate tragedy in life. The ultimate tragedy is to die without discovering the possibilities of full growth. The approach of death need not be denial of that growth.

Advice: You may be able to give something to others even during your toughest moments.

Read one of our hospice stories, or read more from the source, Norman Cousins’ book, Head First: The Biology of Hope.

It worked great until she wasn’t doing so well: Physician/patient rapport

Yesterday’s post discussed a recent study of the usually ineffective attempts by doctors to build rapport with patients through self-disclosure.

Internist Howard Berkman, a co-author, ruefully disclosed his own story. He used to try to inspire older patients by telling them about his active mother, who walked two miles a day in her late eighties.

"It worked great until she wasn’t doing so well," he said. His mother is now 94. "By then, people got used to asking, 'How’s your mother?' I’d have to say, 'Well, she’s struggling.'"

Patients began worrying about his mother, and they wondered how good a doctor he was if he couldn't even keep his own mother healthy.

He had thought that talking about himself and his family strengthened his connection with patients, but he came to realize it wasn't such a good thing. "It created a complex set of issues, totally unnecessary in caring for these people."

Empathy, understanding and compassion work better than self-disclosure, the researchers found. Personal conversation is important, but doctors need to find time for it outside of patient visits.

Advice: If this is a problem, ask the office manager to mention it discreetly to the doctor.

Read Rita Rubin’s story in the June 26 USA Today.

I didn’t even examine him: Physician-patient communication

One doctor – call him Dr. M – says he has always been circumspect when he talked to patients. But one patient who came for a visit five years ago for a physical exam was skilled at furniture building, Dr. M's hobby. The patient spent 40 minutes with the doctor. When he left, Dr. M looked at his notes. "I realized I didn’t even examine him," Dr. M admitted.

The patient was gracious when Dr. M called to apologize, saying, "We’ll just wait for next time."

A recent study in the Archives of Internal Medicine concluded this happens often, though maybe not for such a long time. Researchers studied 113 surreptitious audio recordings of office visits of test patients. The researchers discovered that doctors talked about themselves in a third of the visits and that there was no evidence that any of the doctors’ disclosures about themselves helped patients or established rapport. Patients were not comforted, and conversations got off track, the authors of the study found, wasting patients' time. "What’s shocking about this article is how often they moved from the patient’s concerns to their own,”"commented one physician chairperson of family medicine at an academic medical center.

Advice: If this is a problem with your doctor, leave a copy of this blog post in the doctor’s office as a gentle reminder.


Read Gina Kolata’s article in the June 26 New York Times.

We decided we were not going to stop fighting: A veteran’s suicide

Lance Corporal Jeffrey Lucey served in Iraq in 2003 and 2004, and returned home a changed person, according to his family. He had nightmares, insomnia, and deep depression, and began drinking heavily.

He told his sister he had picked out a rope to hang himself with. His family persuaded him to seek care through the Veterans Administration, where he admitted himself on May 28, 2004. He was placed in a locked psychiatric ward, but was released three days later. Two days later, he totaled the family’s car in what the family believes was a suicide attempt. A few days after that, his family persuaded him to return to seek treatment. He did so on June 5, but he was denied treatment, with no psychiatrist available, his family said. On June 22, he hanged himself in the basement of his family’s home in Belchertown, Massachusetts.

Now "the Lucey family has been an inspiration, a one-family advocacy group that has tried to bring a lot of visibility to suicide and to mental health issues for veterans," said Paul Riechkhoff, the executive director of Veterans of America. Veterans of America estimates that 117 Iraqi war veterans have killed themselves.

Jeffrey’s family has retained attorney Cristobal Bonifaz to file a lawsuit against the government in federal court in Springfield, Massachusetts. The attorney said the VA’s failure to recognize Jeffrey’s suicidal tendency amounted to negligence and medical malpractice by an overstressed, understaffed system.

Advice: Refer Iraq war veterans to Veterans of America.

You can read more in Charles Sennott’s story in the Boston Globe of July 27.

A glorious blend of forces: Presbyterian Health Plan and Whipple

Gordon Hendrickson is a retired administrator for the YMCA and the Spina Bifida Association, and now lives in Albuquerque, New Mexico.

Five years ago, at age 66, routine blood tests found something wrong with his liver. After more tests, he received a diagnosis of pancreatic cancer. His doctors thought they had detected it early enough for surgery to save his life. But he would have to go elsewhere for the rarely-performed surgery, they advised, because doctors in Albuquerque had little experience with the rare, complicated, and risky Whipple procedure he needed.

Studies show that treatment by experienced surgeons and hospitals with much relevant experience greatly increases the odds of survival for patients with pancreatic cancer, and indeed, for many other conditions.

Gordon’s internist, Dr. Kristine Bordenave, found a major cancer center in Houston that could safely perform the Whipple – M.D. Anderson. But his insurer, Presbyterian Health Plan, insisted on selecting from local surgeons who had each performed an average of only a single Whipple.

Since Presbyterian Health Plan had refused to pay for care at M.D. Anderson, Gordon used a new credit card for the deposit, and later got socked with $80,000 of medical bills.

He fought Presbyterian for a year, filing two appeals. He took his case to a state review board, where he had to represent himself because he could not afford a lawyer. He ultimately won the case, forcing Presbyterian to pay the whole bill.

In June, his five-year checkup showed he has been cured of pancreatic cancer. A glorious blend of forces – smart doctoring, luck, and his own wisdom and grit – had come together to save his life.

Advice: You don’t have to accept an insurer’s No as the final answer.

Read the source story in Denise Grady’s July 29 article in the New York Times.

He resumed his normal schedule: Vice President Cheney’s defibrillator/pacemaker and side effects

Vice President Dick Cheney, who has a long history of heart disease, had minor surgery on July 28 to replace the implanted heart device that monitors and adjusts his heart rhythm (an “implantable cardioverter-defibrillator”). An annual physical the month before had showed the battery had reached the level at which replacement is recommended.

Mr. Cheney was sedated for the procedure, which was performed Saturday morning. He walked out of the clinic at mid-day, returned home, and “resumed his normal schedule,’ his spokesperson said.

Mr. Cheney has had four attacks, the first at age 37. He has had a quadruple bypass surgery and two angioplasties to clear blockages in the heart arteries.

Men of the age of Pres. Bush and VP Cheney may be too stoic to admit they are experiencing even temporary periods of disability or physical weakness. This stoicism or denial may lead them to make poor decisions. It seems that these men ignored the subtle but powerful temporary after-effects of conscious sedation, when their judgment may well have been impaired, at our peril. In both cases in the last month, their judgment before surgery that they would be just fine, thank you, right afterwards, was also mistakenly self-confident.

Advice for those recovering from same-day surgery: Admit you are not fully yourself and give yourself the day off.

You can read more from the source article in the New York Times of July 29.

I’d be dead if I’d stayed with the first provider: A cancer survivor

Karen Pasqualetto, age 36, is slight and dark-haired, with a soft voice. She has a law degree and a Type A personality, and worked for several technology start-ups. She made enough money to quit that career and do something she loved, teaching sixth grade at a Catholic school in Seattle.

After giving birth to Isabel by Cesaerean section last July, she noticed a lump under her ribs, the size and shape of a banana. Doctors noticed it but did nothing. Calling it a bruise, they sent her home.

Within a week she was back in the hospital, terribly sick – swollen with fluid, vomiting, so anemic she needed a transfusion, with severe abdominal pain. Tests found tht advanced Stage 4 colon cancer had already spread to her liver.

Crying, her doctor told her she had six months to live. Surgery was not recommended because the liver tumors were too extensive. Her doctor referred her to an oncologist for palliative chemotherapy to ease her symptoms rather than try to cure her.

Her health plan would only cover palliative care. But she had read enough about her disease to know that the proposed treatment plan did not include the full program of drugs typically recommended for Stage 4.

Her family urged her to look for other options. Her husband had a new job that provided better health coverage, and they switched to a different insurer.

"I’d be dead if I’d stayed with the first provider," she said.

She rejected the first oncologist after one visit and consulted the Seattle Cancer Care Alliance and Swedish Cancer Institute. Both recommended aggressive chemotherapy.

Her new oncologist, Dr. Philip Gold, told her "I have a lot of tricks up my sleeve. This is what we start with, and if it doesn’t work I have this, and then I have a clinical study." Karen said, "The feeling I got was, there was hope, and a plan of attack."

Karen recently celebrated her daughter’s first birthday.

Advice to cancer patients and their families: Aggressively seek second medical opinions from doctors who have extensive experience in treating patients with your disease.
Read the source story in Denise Grady’s July 29 article in the New York Times.

Mother was convinced psychiatric meds were poison: Adverse drug reaction of diabetes

"Shyla" was a shy patient who ate nothing but white foods, and assaulted anyone who entered her airspace on the hospital ward. She was mute, but not uncommunicative. Some of her problem was her psychosis. Most of it was her mother, who was appointed by a court to be Shyla’s legal guardian and to monitor her medications. But her mother was convinced that psychiatric medications were poison. So Shyla would go home on weekend passes and return with all her pill bottles untouched, and without a shred of sanity.

This continued for months. Her mother brought a notebook to each visit that listed the side effects. Shyla’s doctors thought her mother was sadistic; she thought the doctors were evil experimentalists.

The doctors successfully persuaded a judge to remove the mother as a guardian and appoint someone else.

The guardian ensured Shyla took her meds. At first, Shyla flourished; she smiled, spoke, became lucid, joined a day program, began overnights in a residential house and was discharged. She seemed happy.

Then she got diabetes and required insulin. By then, studies had consistently found a link among her condition, antipsychotic medications, and diabetes. In 20/20 hindsight, it was clear that she had had an adverse drug reaction to the antipsychotic drugs . Her mother had been right.

As her doctor, Elissa Ely, concluded, "We doctors were innocent but at fault. The ground beneath professional feet should grow firmer over time – one ought to feel more certain of what one knows. But the more I know, the more I am afraid."

Advice: Have a healthy fear of possible side-effects, and use only the least amount of drugs to be effective.

Read Dr. Elissa Ely’s article in the July 24 NY Times.

I will remain forever grateful: Euthanasia and morphine

Dr. Darshak Sanghavi’s story

Afflicted with a rare, progressive scarring disease of the lungs, my father suddenly deteriorated one day and was hospitalized on a ventilator. Over weeks, my family endured repeated setbacks, as his lungs filled with fluid, his kidneys failed, and his heart weakened. His blood became acidic. Soon, fungus infected his bloodstream. His body ballooned, as if inflated with fluid. Doctors continuously infused intravenous narcotics, to deeply sedate him, and paralyzing agents to prevent any reflexive movements.

For my father, death would mean rest, or "shanti," in the Hindu-Jain tradition. For many people, death is not necessarily evil.

We met with my father’s doctors and agreed on a plan. On the day we decided to let my father die, our family filed into his room. Some prayers were said. The monitors were silenced. The doctors shut off the infusion of paralytic drugs, and injected a large dose of narcotics. The paralysis would still last for several hours. With a knowing nod to us, attending physician then left the room and my father’s nurse lingered behind.

She met my eyes and then my sister’s. Both physicians, we nodded back knowingly. Then the nurse reached over to the ventilator, and in an act of compassion for which I will remain forever grateful, she quietly turned the machine off.

Advice to families with gravely ill loved ones: Consider hospice care.

Read the source article by Dr. Darshak Sanghavi in the July 3 Boston Globe.

He doesn’t want to read the list: Illiteracy, patient compliance, and the electronic medical record

Dr. Erin Marcus’ story

Last year, the community clinic where I work began requiring patients to go elsewhere for their blood and urine tests. For some patients, this has posed insurmountable obstacles, for shameful reasons.

One patient, compulsive about keeping his appointments with me, consistently fails to see specialists I recommend, and to have tests performed elsewhere. He always has an excuse.

And so I am stuck with a pleasant, complicated patient and no way to monitor the effects of the medicines I have prescribed.

Why is he non-compliant? Probably because he can’t read the map or directions I gave him, though he’ll never admit it – like many patients. In fact, one in seven adults in the U.S. has "below basic" prose literacy, i.e., they cannot read simple text. It is particularly hard for these patients to navigate the healthcare system, and their doctors are left without basic diagnostic information they need to provide good treatment.

Our comment:
Too bad they didn’t have Dr. Kalow. My son’s former pediatrician was Dr. Bruce Kalow, the doctor you wish you had. On his own initiative, during evenings at home after seeing young patients in his working class Somerville, Massachusetts community, Bruce developed a medical software program. His program improves communication with his patients and their families, many of whom primarily speak Spanish and Portugese, often with low literacy in English. At the end of the visit, he types briefly into his personal computer, which prints a sheet for the parent (and the doctor’s office) about the diagnosis, treatment, prescription, and follow-up instructions. When needed, the program readily provides the information in Spanish or Portugese.

Advice: Tell your foreign-born friends with little English literacy to look for a nearby doctor who routinely provides written summaries to patients in their primary language.

Read the source story by Dr. Erin Marcus in the July 24 New York Times.

They used a different brand: Defibrillators

In yesterday’s story, Dave described how he was brought back to life by a mix of competent providers at two Wisconsin hospitals, loving family members, automated electronic defibrillation (AED) and cardiopulmonary resuscitation (CPR).

The technology helped to save Dave’s life – and yet there is still great room for improvement.

Troy Betts, now a nurse manager in another hospital, was working in the Emergency Room of a Wisconsin hospital five years ago when paramedics brought in a man whose heart had been restarted by a defibrillator. Hospital nurses had to change the chest pads on the patient’s defibrillator because of a compatibility issue: the paramedics used a different brand of defibrillator. When the nurses changed the pads, the patient died.

Emergency workers later told Troy more stories of patients who died after their chest pads were switched, causing the patients to lose the electricity that had been regulating their erratic heartbeats. Heart attack patients frequently face two or three pad switches en route to the Emergency Room. Different businesses, schools, malls and other public places often use brands of AEDs that are incompatible with the ones used by paramedics and hospitals. And if police and Med Flight are involved, "it’s not unheard of to have four or five changes," Troy said.

But the pads’ likely role in their deaths generally remains unknown. "Most reports just say the heart stopped," Troy said.

Troy saw an error, and then took initiative to learn its root causes through talking with colleagues. The solution lies in standardization – a particularly difficult challenge when it requires either government policy or a formal decision by a professional association to coordinate action among competing vendors and healthcare provider organizations.

Advice for healthcare providers: When facing a problem this tragic and knotty, the best thing you can do may be to tell your story publicly, to rouse others to act.

Read Dave’s story, told here yesterday, and the source story by David Wahlberg in the Wisconsin State Journal of June 25.