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Saturday, August 30, 2008

She signaled by blinking her eyes and nodding: An endurance athlete at the end of life

Barbara Warren, a champion endurance athlete in the over-60 age group, died in Santa Barbara, California on Tuesday, three days after crashing during the cycling portion of the Santa Barbara Triathlon.

She had broken her neck in the fall and was paralyzed from the neck down, breathing with a ventilator, when she signaled, by blinking her eyes and nodding, that she wanted the ventilator turned off.

"She wanted to leave," said her sister. "No athlete would like to have a life with only their eyes talking."

Barbara had competed 13 times in the Ironman Triathlon World Championship in Hawaii, winning it at the age of 60. The triathlon consists of a 2.4 mile ocean swim, a 112-mile bike ride, and a 26.2 mile marathon.

Advice to family members with gravely ill relatives: Honor the wishes of family members about the end of life.

Read another end of life story.

Thanks to Bruce Weber for the source story in today's New York Times.

Wednesday, August 27, 2008

Each of us has had a serious error: Testimony on patient councils for hospitals

Here is the testimony to the Massachusetts Executive Office of Health and Human Services that I delivered this afternoon on the health care law that Gov. Deval Patrick signed on August 15:

Dr. Bigby, Mr. Wilkinson, and Commissioners,

It's very late in the day, and I appreciate your patience in hearing our testimony on Chapter 305.

I'm a member of Health Care for All's Consumer Council. Each of us has had a serious error in our family.

We're very happy with the quality sections of the newly signed law, Chapter 305, and urge you to request a lot of money in your departmental budget for the next fiscal year for monitoring hospitals' reporting of serious events and hospital infections, and encouraging rapid response teams in hospitals.

In the interest of time, I'll focus on hospital patient and family advisory councils. Elsewhere in the country, these councils have greatly raised patients' satisfaction levels. And, since patients are trained on how to care for themselves, fewer need rehospitalization, and fewer come back to the E.R., after leaving the hospital. So there can be big cost savings, too, IF people receive solid training on how to be effective council members. At a few thousand dollars to train a team at each of the 70 hospitals in the state, that comes to a few hundred thousand dollars. That money would be well spent.

Thanks for your consideration.

Advice: Look for opportunities to create and influence laws for patient partnership.

Read another story about testimony on Massachusetts legislation.

Tuesday, August 26, 2008

Leaving only his heart untouched: An Iraq vet's fight with the Veterans Administration

Sgt. Tony Wood, 41, now based in Schofield Barracks in Hawaii, keeps a large color-coded board by the door with reminders about his appointments, his chores and his belongings, all part of the Brain Injury Recovery Kit he received from a nonprofit group called the 10 in 10 Project. His wife calls him all day with reminders, and after losing his keys countless times, he attaches them to his pants. Notebooks fill his pockets.

In his view, the military is still failing to grasp the depths of his injury, and those of other soldiers like him.

In July 2005, Sergeant Wood's Humvee hit a roadside bomb cemented into the curb. The blast set off a chain reaction, triggering two American fragmentation grenades inside the Humvee along with an antitank weapon and countless rounds of ammunition. The two other soldiers riding with him died in the blast. The explosion tore through Tony's arm and abdomen and then ricocheted inside his body, leaving only his heart untouched. His liver had a fist-sized hole, he lost his spleen and part of his stomach, and he sustained damage to his lungs and diaphragm.

His first memory afterward came a month later at Walter Reed Army Medical Center, when he saw his wife and asked her, "Why are you in Iraq?"

Doctors patched up most of his physical wounds over five months. But his wife noticed that he was not himself mentally. He did not remember someone who had just walked out of the room, and forgot questions he had just been asked. He struggled to read one chapter of a book.

At Walter Reed in December 2005, doctors gave him a brain injury test. But it was inconclusive. "They tried to say I had A.D.D., I needed a good night's sleep, you name it," he said.

As he recovered in the Warrior Transition Unit of Tripler Army Medical Center in Hawaii, he tried to decide whether to stay in the military by switching to less taxing jobs, or to leave, collect his benefits and find a civilian job. But his previous jobs – professional cowboy, scuba instructor, construction worker – were out of the question.

He fears that the best job he can get now is to be a greeter at WalMart. With four foster children, two biological children and his wife, he applied to stay in the military. The Army Medical Board deemed him unfit for active duty and sent him to the Physical Evaluation Board for a disability rating that would determine his benefits package once he was discharged from the Army.

When he saw his rating in March, he was floored. Despite his extensive wounds – brain injury, constant pain, failing hips, headaches, noise sensitivity, no spleen, lung damage, liver damage, panic attacks and chronic esophagitis – he received only a 50% disability rating. His brain injury made up 10% of the total. The Board said "his stated difficulties are more consistent" with post-traumatic stress disorder.

"That disability rating was completely wrong," said Mr. Baker of Disabled American Veterans.

"You are still treated like you are trying to beat the government out of money," Tony said. "It's not like I fell off a barstool."

Advice to seriously wounded warriors: You may need to keep fighting after you come home. If so, get a champion, and tell your story long and loud, to win the war at home.

Thanks to Lizette Alvarez for the source story in today's New York Times.

Monday, August 25, 2008

The team physician provided a third opinion: Elective surgery

Boston Red Sox pitcher Curt Schilling has a record of 11 wins and 2 losses in the post-season, the best record of any pitcher with at least ten win/loss decisions. Now at age 41, he has not pitched this season because of a shoulder injury.

After his problem was diagnosed as a tendon injury, the team physician recommended rehabilitation. Curt has been receiving rehabilitation since spring training. Since then, he got a second opinion from another doctor, who recommended surgery. The Mets' team physician provided a third opinion, agreeing with the team physician.

Curt has chosen surgery. It is likely to take him about six months to recover fully.

Advice to people considering surgery: Get additional opinions from a variety of doctors if you're not sure.

Read another second opinion story.

Thanks to Jack Curry for the source story in the New York Times of June 21.

Friday, August 22, 2008

What do I have to lose?: Experimental stem cell therapy

I have been tossing and turning all night wondering where I get my strength, but I dig deep and find the answer, always, somewhere in my mind's abyss. A friend told me yesterday [now a year ago] that this will be my calling when I get better to breathe life back into people and talk about my experience with this illness and my journey to get better.

Drew Schemera, 35, wrote this in his blog, The Journey, a year ago before going from his Connecticut home to Beike Biotechnology in China for experimental stem cell therapy, six months after being diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease), and being given a life expectancy of 2.5 years.

He feels he did the right thing. There were "no clinical trials in the USA of any significance and no cure on the horizon," he wrote. "I made a choice to come to China and work my butt off in therapy and change my diet, and I'm slowing it [ALS] down. I probably will die from ALS, but I'll be damned if I'm not going down swinging! What do I have to lose?"

However, experts at the International Society for Stem Cell Research and elsewhere caution that professional standards for stem cell therapy have not yet been set. Dr. George Daley, the president of the Society, decries a "misconception by some patients that the cure is already here." He adds, "We need to be clear that the path to cures is a long and arduous one."

Advice: Make your own critical decisions, after careful thought.

Thanks to Neil Munshi for the source story in the Boston Globe of June 13.

Thursday, August 21, 2008

It was wonderful to hear from him: A social networking site for a wounded Iraq veteran

Anna Carncross set up a CaringBridge web site for her uncle, Army Sgt. 1st Class Chris Blaxton. The 46-year-old soldier from Okemos, Mich., was severely injured by a roadside bomb in Iraq in October.

He was airlifted to Germany and wound up at Walter Reed Army Medical Center in Washington a few days later.

"We didn’t necessarily want anyone and everyone to be able to read about Chris but wanted all of his friends and family to be able to visit the site as often as they wanted," Anna said. "When Chris first got hurt, there were phone calls and e-mails going everywhere and it was impossible to make sure that everyone was updated." She said posting on the site saved time for the family so they could take care of Chris, his wife, Sabine, and their four children.

"It was also a way that everyone could reach out to Chris by leaving comments for him to read," Anna said. "It kept everyone up to date on Chris’ progress. Once he was able to, he started to update the page himself and it was wonderful to hear from him."

In June, a large homecoming was held for Chris at Okemos High School.

Advice for family members: Keep your friends and family posted by using a free web site like this one.

Read about a similar personal health networking website.

Thanks to Vince Little for the source story in the July 18 issue of Stars and Stripes.

Wednesday, August 20, 2008

Doing handstands on my walker: Elective amputation

Bonnie Denis was only three years old when a rare virus, transverse myelitis, attacked her central nervous system. It left her temporarily paralyzed below the waist. But she bounced back quickly, and by age five, "I was doing handstands on my walker." But as she grew, the muscles in her feet atrophied, and the bones grew crooked.

Now, when she walks, it feels "like there are a bunch of knives stabbing me," she says.

Even so, she has lived a very active life, dabbling in acrobatics. She keeps an active and quirky sense of humor. Now at 30, she has made a difficult and rare choice, after many operations and years in a wheelchair. The decision is as personal and unique as her custom-painted, raspberry-pink crutches.

She decided to find a doctor to amputate her excruciating right foot.

The decision follows a series of operations. While she was in high school, surgeons invented a series of procedures to reshape her feet. They broke bones and reset them. They implanted metal pins and took them out again. They augmented her own bones with bones from cadavers. Once horrified, she came to think it’s cool: "I'm part zombie," she says.

Bonnie knows the trade-offs; she knows surgery, and wheelchairs, and what it feels like to walk. She is making her own choice – maybe not the one you or I or her doctors would make for themselves – but none of us has walked a mile in her shoes. It's a well-considered decision, and it's hers.

Advice: Explore your choices thoroughly, and make your own choice.

Thanks to S.I. Rosenbaum for the source story in the June 16 issue of the Boston Globe.

Monday, August 18, 2008

Only in America: Pre-existing conditions and their consequences

The grotesque reality of my life has been constant constraint by the need for health insurance. With a congenital heart condition and a degenerative eye condition, I married my wife while in graduate school because I was no longer eligible for my parents' group pan, and at the time few graduate programs offered group health.

My career choices were dictated by the knowledge that I needed group health: the tenuous life of an academic in a tough job market seemed too risky, so I switched to law school.

I avoided private-sector legal jobs upon discovering that many firms do not provide group insurance but expect individual lawyers to find individual health plans, so I ended up working for the state.

Fortunately, things have worked out for me so far. It was not desperate need, such as you described [in "Health Benefits Inspire a Rush to the Altar, or Divorce Court"] but a sense of obligation and responsibility that drove me to make major life decisions based on health insurance needs (I do not have family who could foot the bill for open-heart surgery).

But only in America are people with pre-existing medical conditions forced to plan every aspect of their lives around the need for group health insurance. I have often toyed with the thought of emigrating to Canada or Britain simply to escape the constant, gnawing, lifelong fear of what might happen should my group health for any reason ever lapse.

-David Tallman, Atlanta

Advice: Insurance may be available through trade and professional associations.

Read a story about a person who has become uninsurable.

Thanks to David for his source letter to the editor of the New York Times, published on August 18.

Wednesday, August 13, 2008

The patient makes barking noises when excited: Google's Personal Health Record

I did a sneaky test of Google's new personal health record, since I was wondering whether they would keep my personal health record confidential.

I filled out a completely truthful profile for a member of our family: a 6-year-old male weighing 35 pounds, who has a whistling heart murmur but is otherwise in excellent health, as he runs daily. The patient is excitable, and makes barking noises when excited or agitated – as dogs often do.

I haven't received any spam or junk mail in his name since entering his profile two months ago. This may mean Google is serious about keeping medical information private…at least for now.

Advice: Consider using a personal health record to track your family's treatments, immunizations, and upcoming appointments.

Tuesday, August 12, 2008

We're the dancers of this life: Yena Marcovicci

Every ball gives you a new opportunity.
Your opponent on the other side of the court is your partner.
There is no failure.
The journey is staying in the moment, not in the score.

Yena Marcovicci died suddenly in the prime of his exuberant life at 62, in October, of a heart ailment. He had kept private the knowledge of the ailment.

He had been a long-time life coach and teacher of The Dance of Tennis at Omega Camp in Rhinebeck, New York.

We're the dancers of this life,
The healers of our world
Of the journey that whirls within
Challenging all that made this life.

Advice: Live as fully and uniquely as Yena, "free to love and free to share the true nature of our soul."

Thanks to Skye Marcovicci for the source poem by Yena Marcovicci, "Gypsy Warrior."

Monday, August 11, 2008

$180,000 of medical services and prescription drugs: Medical identity theft

In May, a woman in Edmonds, Washington was arrested for using another woman's identity to obtain nearly $180,000 worth of medical services and prescription drugs. Authorities say Barbara Reuter took her victim's personal information – including her date of birth, Social Security number and other information – and convinced doctors she was a real Medicaid client. She was caught when the health plan's billing department noticed duplicate billings for virtually simultaneous medical visits.

Medical identity theft can be just as time-consuming and frustrating to resolve as are the more common forms of identity theft that involve stolen credit cards or forged checks.

Advice: Shred your explanations of benefit forms before recycling them.

Thanks to Phuong Cat Le for the source story in the Seattle Post Intelligencer.

Sunday, August 10, 2008

Enough information was not provided: Emergency response through VoIP

Using the Internet instead of a traditional phone to call 911 could complicate emergency response to your home, Canadian officials are warning.

The warning comes after the death of an Alberta boy that has been linked to a mix-up caused by use of an Internet telephone.

Voice over Internet Protocol or VoIP, which allows you to make phone calls through a broadband Internet connection, has been available in the Greater Toronto Area for about four years. VoIP service is available throughout York Region. One of its selling points is it can be less expensive to make long distance telephone calls than using a traditional phone service provider.

The reliability of making emergency calls with the Internet service became the subject of debate earlier this week after an 18-month-old boy died. Paramedics were dispatched to a Mississauga address after a VoIP 911 call instead of being sent to the Calgary address where the child was because enough information was not provided during the call and the Ontario address was on file for the customer.

A complication arises when VoIP providers do not have the technology to allow their subscribers to call 911, according to York Regional Police spokesperson Constable Marina Orlovski.

If you have a VoIP phone and move it to another location, such as across town to a relative’s home and call 911 from there, the information sent to an emergency call taker will appear as your home address — not where you are.

"We have the capability to receive the calls. It's up to the VoIP provider to make sure their clients, first of all, have the technology and second, that their subscribers know about (911 service) and they have a system for them to sign up," Const. Orlovski said.

The traditional 911 system, based on land line use, routes an emergency call to the correct 911 center, according to Markham Fire's public education officer, Dave Blizzard. Enhanced 911 service provides the emergency call-taker your name, address and phone number.

Markham Fire also warns that access to 911 service for VoIP customers may not be available during a power failure or if the Internet connection is down.

"A phone call from your home or a neighbour's home is still so important," Mr. Blizzard said.

A Canadian Radio-television and Telecommunications Commission (CRTC) ruling on Oct. 20, 2005, required all local VoIP providers in Canada to provide notice to current and prospective customers about the availability and limitations of their 911 and enhanced 911 service. The CRTC also ruled local VoIP providers would have to communicate their 911 service limitations to existing customers at least once every year.

Advice to VoIP customers: Find out if 911 service will work through your VoIP provider.

Read another story on getting prompt emergency response.

Thanks for Joe Fantauzzi of YorkTimes.com for the source article.

Saturday, August 9, 2008

After three surgeries: Health advocates

After three surgeries, 63-year-old Judy Sherer of Norcross, Georgia still had chronic pain in her left shoulder. She'd lost faith in her doctors, and in despair, tried a new health benefit offered by her employer.

The service, Health Advocate, is a call-in center that helps customers find the right doctor, haggle over insurance coverage and manage other medical systems headaches.

An advocate helped Judy find a new surgeon, one who found metal shavings left in her shoulder in error by a previous doctor. The advocate also negotiated the charge for her physical therapy down to $40 per visit from the $200 charge she was told of initially.

"It saved me a ton of money," she said. “I’m very, very pleased.”

The largest customers of health advocacy services are companies, not individuals. "The employers are interested because it means their employees are not on the phone taking care of doctor's visits during work hours, says Carol Fischer, a spokeswoman for Pennsylvania-based health Advocate.

Advice to frustrated consumers: Consider using a health advocate.

Read another patient advocate story.

Thanks to Mike Stobbe for the source article in the July 27 issue of the Atlanta Journal-Constitution.

Friday, August 8, 2008

Why there's a market for these drugs: Obsessive-compulsive disorder

From James Vlahos' article about the pet owners' use of mood-altering drugs for their pets:

At the end of the day, Dr. Nicholas Dodman, leaning back in his chair, launched into a story about a human obsessive-compulsive-disorder sufferer he had met – a man who repeatedly tugged at his beard. Dr. Dodman asked him if he had ever stopped, and the man said he did during a hitchhiking trip across Canada. Dodman thought he knew why: "He went back to being a human being. He was watching out for real dangers. He was trying to go real places. He was concerned about his next meal. He was thinking about where he was going to sleep. And he wasn't concerned about the stupid beard-pulling, because now he had a real life. When did the problem start again? The minute he sat back in front of a flickering computer screen."

His theory, essentially, is that the causes of mood disorders and obsessions in humans and our pets aren't so different – faulty genetics, dreary environments. Whether cubicle- or cage-bound, we get too little exercise; we don't hunt, run or play enough to produce naturally mood-elevating neurochemicals. Strangely enough, I had already heard this theory – from a pharmaceutical company executive who, for obvious business reasons, didn't want to be named. "All of the behavioral issues that we have created in ourselves, we are now creating in our pets because they live in the same unhealthy environments that we do. That’s why there's a market for these drugs."

Advice: Being in natural surroundings can help people heal.

Thanks to James Vlahos for the source article in the New York Times Magazine of July 13.

Thursday, August 7, 2008

You and your little furkid will benefit: Dog therapy visits

We had our very first therapy visit on Tuesday and I can't give an adequate description of how life-changing it was. It's so amazing to see what an effect this 12-lb. bundle of white fur had on people.

We recently completed a 16-week training course to become a certified therapy dog team. We graduated in mid-May and this week we made our debut visit to the brain injury rehab floor of St. John's Medical Center [in Missouri].

Before we even got to see a patient, Ms. Chelsea found herself surrounded by a visiting family. Her little tail was wagging furiously as she looked from one person to another. She was in her element being the center (literally) of their attentions.

Our staff coordinator didn't (and won't) tell us what the patients are in for, and it's none of our business really, but she did share some feedback with us after our visit. For example, our first stop was a young woman who had half her head shaved and a visible scar along her head. She was lying down and had trouble speaking (as did most of the people we visited). The minute she saw us come in, she asked for Chelsea to be placed next to her on the bed. I put her up there on her new pretty pink bath towel (to protect the hospital bed from fur) and this woman was clearly thrilled to be in the company of unconditional love. She kept petting her and Chelsea did a great job of staying put, just like we learned in class. The patient talked non-stop about dogs, her dog, and how she worked for the American Kennel Club and knew about all the breeds. We always work in teams so my fellow classmate Cindy was in there too with her dog Coco. This patient was so happy and energized by the presence of the dogs and just wouldn't stop talking. As we left her room, our staff coordinator pulled us aside and said, "She didn’t talk at all last week!"

And so it went the rest of the visit. We met with other patients who were in various stages of recovering from brain injuries/surgeries. Some had a hard time communicating or using motor skills but all of them did what they had to in order to pet our dogs. And some of them were very chatty and excited by our visit.

At the end of the visit, the coordinator told us they saw remarkable signs in the patients...cognitive thinking, biological changes, chronological knowledge, and a whole bunch of other markers that sailed over my head (I had a lot of things already swimming around in there). We walked out of there on a cloud.

To witness a dramatic impact like this is a gift. After getting through to that first patient, all the weeks of driving back and forth to class and all the practice we did just went right out of my memory. Just knowing we made a difference to one person made it all worthwhile.

If you have a dog, I can't urge you enough to look into being a therapy dog team. You and your little furkid will benefit in so many ways...a closer bond with each other, a more well-behaved canine citizen, relationships with classmates, and the knowledge and first-hand experience of helping people.

We will be visiting there twice a month.

Advice to pet owners: Look for ways to offer your pet's love to others.

Read another pet story.

Thanks to the source, my friend Victoria in St. Louis. Bravo to CHAMP Assistance Dogs!

Tuesday, August 5, 2008

Kernels of corn in their shoes: A simulation of life after age 85

They put on distorting glasses to blur their vision, and stuffed cotton balls in their ears to reduce hearing, and in their noses to dampen the sense of smell. They put on rubber gloves with bands around the knuckles to interfere with their manual dexterity. And they put kernels of corn in their shoes to mimic the feel of feet that have lost some cushioning fatty tissue – all to simulate what it can feel like to be age 85 or older.

Then to work: unfolding and reading a map with tiny type, blurred by the glasses, in order to plot a driving route. And buttoning a shirt, finding a number in the phone book, dialing the tiny buttons on a cellphone, fishing change from a zippered wallet.

Dr. Vicki Rosebrook developed this set of exercises, called Xtreme Aging, to teach middle-aged and young people sensitivity to the humbling difficulties that seniors can experience. As the Executive Director of the Macklin Intergenerational Institute in Findlay, Ohio, she teaches the program to people in schools, churches, and workplaces.

She started the company three years ago, after a teenage clerk at a hotel joked about her husband being a member of AARP. “We all started sharing experiences and realizing [the] discrimination.”

Advice to people in contact with elderly patients: Walk a mile in their shoes.

Read an example of compassionate care.

Thanks to Jim Leland for the source article in Sunday's New York Times.

Sunday, August 3, 2008

In the middle of the night: A lawsuit on the patient dumping of an illegal immigrant

Luis Alberto Jimenez grew up in Guatemala, and then came to the U.S. illegally. His wife and two children stayed in Guatemala. He worked industriously in Florida for several years. On Feb. 28, 2000, a drunk driver hit his car, severely injuring Luis. Luis suffered a traumatic brain injury, along with extensive bleeding, two broken thigh bones, a broken arm, multiple internal injuries, and a terribly lacerated face.

He survived, after intensive medical and surgical interventions. The hospital sent him to a nursing home. In the nursing home, he wasted away, and developed ulcerous, infected bed sores so deep that the tendons behind his knees were exposed. The nursing home sent him back to the same community hospital. Again, the hospital provided life-saving care, though Luis remained in a vegetative state, coiled in a fetal position, for more than a year.

Stunning his doctors and relatives, though, Luis gradually woke up and started interacting with people. He regained a mental level roughly equivalent to that of a fourth-grade child. But he still needed much long-term care. He had no insurance, and the hit-and-run driver was uninsured, too.

Federal law requires hospitals that accept Medicare to transfer or refer patients to appropriate post-hospital care. But the government does not finance long-term care for illegal immigrants. The hospital's discharge planners could not find a rehabilitation program or nursing home in the U.S. that would accept Luis. The hospital eventually had an air ambulance pick up Luis at the hospital in the middle of the night on July 10, 2003, and fly him back to Guatemala.

After a brief stay in the under-equipped rehabilitation hospital in Guatemala, Luis was brought to his mother's home in rural Guatemala. His 72-year-old mother now cares for him. He has no medical care. Recently he has had several violent seizures. His mother says, "Every time, he loses a little more of himself."

Too late to help Luis, a Florida appeals court decided in 2004 that the American hospital should not have sent Luis away. The ruling set the stage for a personal injury lawsuit, brought by the law firm of Searcy, Denney, Scarola, Barnhart & Shipley in West Palm Beach, Florida. The lawsuit seeks money for medical care and punitive damages for Luis.

Advice for illegal immigrants with serious medical problems: Get a lawyer to fight for you.

Read another illegal immigrant’s story.

Thanks to Deborah Sontag for the source story in today's New York Times.

Saturday, August 2, 2008

The journey started from a phone call in the back of a taxi: Learning of clinical trials of new drugs.

Courtney Hudson's story
Late one Sunday evening In January 1999, my husband called me on his cell phone from a taxi. He was seriously ill and on his way to the hospital. The doctors were able to stabilize him temporarily, but they recommended additional surgery. My husband refused to undergo what would be a long, difficult operation that would require months of recovery. I was obviously upset - not only about my husband's condition, but also about his apparent unwillingness to accept treatment.

I was torn between the competing desires to respect his choices and for him to get treatment immediately. I began to search for treatment options, mainly through the Internet, but found the information presented too simplistic, too scientific, or too voluminous. By chance, a friend in California sent my husband an article about an alternative surgery that had only recently been developed. This surgery was being performed only a mile from our home in New York, yet we had never heard about it. My husband underwent the surgery, and today is doing fine.

We were lucky, but access to new treatment options, including clinical trials, should not be serendipitous. This is a time when pharmaceutical companies, biotech companies and the government have enlisted the support of nearly 50,000 doctors to conduct more than 10,000 clinical trials each year -- almost one-third are designed to test new drugs and therapies for cancer patients. Patients and families should have a way to find these new drugs and therapies without having to depend on luck.

After months of interviews with patients, advocates, caregivers, and researchers, Sarah Hutter, Glenn Rice and I founded EmergingMed.com in January 2000 to offer patients and their families a fast and easy way to find and understand available treatment options.

We have created the EmergingMed online matching and referral system to reliably connect patients directly to the doctors conducting clinical trials in a matter of minutes.

This personal journey, which started with a phone call from the back of a taxi, will hopefully benefit many others by providing more options for their own treatment and by accelerating the clinical research process that develops new drugs and therapies for all of us.

Advice to patients thinking of surgery: Figure out all your options first.

Read another clinical trial story.

Thanks to Courtney Hudson for the source at the EmergingMed.com website.

Friday, August 1, 2008

An extension of his work as a doctor: A memoir by a sufferer of Lewy Body disease

Fifteen years ago, he had been a member of the Cardiology "Dream Team" assembled by the Boston Celtics to evaluate Reggie Lewis after he collapsed during an NBA playoff game in 1993. And he was a professor at Harvard Medical School.

But nowadays the former marathon runner is stooped, and shuffles when he walks. Most notably, the disease has robbed him of the ability to communicate clearly, logically and quickly. Dr. Graboys has Lewy Body dementia, a syndrome that affects a third of Parkinson's patients.

Even with this humbling disease, Dr. Graboys was eager to tell his story because he thought it might be helpful to others facing their own medical struggles. He wanted to capture his experience on paper quickly, because he didn't know how much longer he would be able to tell his story.

He contacted Peter Zheutlin to write his story. Dr. Graboys was an unusually gifted clinician and an unusually compassionate doctor who believed his most important diagnostic tools were his ears; he listened, and his patients loved him for it. In turn, he valued each patient's trust as a gift offering a window into the human condition.

Over the course of a year, he and Peter met twice a week at his home in a suburb of Boston, and he gave Peter an intimate tour of his life and his mind Peter's book tells of the toll the illness has taken on his sex life. It may be too frank for some, but Dr. Graboys was intent on being as brutally honest as possible. As a physician, he had created an atmosphere in which patients felt safe in disclosing their most personal concerns. He understood that mny of them were relieved to find a physician with whom they could talk comfortably about sex.

The book became a focal point of his life after he had to retire from medicine in 2005. Writing it was an extension of his work as a doctor. He proved that despite what he lost, he could still share abundant knowledge and wisdom.

Advice to people with a chronic illness: Tell your story to share your life lessons.

Read another story about Lewy body disease.

Thanks to Peter Zheutlin for the source article in the June/July issue of Metrowest Magazine.