Expectations of surgery: She's grateful, But

Alina Tugend's story

My father recently had his second knee operation in a year.  The first time, things went poorly.  His rehabilitation was difficult and months later, he still could not walk well or, even more important to him, play tennis.

He had the operation a few weeks ago, and he's already doing much better.  Different doctor, different outcome.  And perhaps, most significantly, different expectations.

"The first surgeon just raised my expectations unrealistically," my father said.  "He told me that in a few weeks I would be out on the tennis court."

I started thinking about how we manage expectations after my father's operation and after a friend, Amy, told me she recently had her cancerous thyroid removed.  The cancer was contained, but one of her vocal cords was paralyzed.  

She wasn't warned about this, but has since learned it is a common side effect of such an operation and can last up to a year.  It makes talking, eating and drinking difficult.

"It's not what I bargained for," Amy said.  "I'm grateful to be alive, but if I had just known, I would have been more prepared before and afterwards."

Advice to people considering surgery:  Consult a professional patient advocate, or read about the experiences of older and wiser patients on the Internet, before consenting to surgery.

Read a story about a man's ill-informed consent for surgery.  Thanks to Alina for her article, "What Did You Expect?  It Makes a Difference," excerpted here from the NY Times of Jan. 14.

All-Inclusive Care for the Elderly: I was my Mom's PACE Program

Roberta Robinson's story:

I grew up in West Roxbury, Mass., married, had children and relocated to Pelham, New Hampshire.  I was a Paralegal and commuted to Boston for 11 years.

Meanwhile my mother was aging in place, and as her health began to fail her needs began to increase so I managed her home care from 60 miles away, making frequent trips to West Roxbury to make sure everything was going smoothly and that she was getting what she needed.   One day I received an internal message that I should keep myself fluid and that I would be out of wherever I was and into her house. 

And that was exactly what happened.

I found it necessary to move back to West Roxbury, however, not yet into her home as I wanted her to stay as independent as possible.  Then it happened….in one week, we had four emergencies…...the last finding her upside down on the couch with her feet on the back of the couch and her head hanging to the floor. It was then apparent that I needed to take the next step and move in with her.  

She was in her late 80’s and got chilled easily and kept the house like a sauna.  I was in my menopausal state and was melting so I became the cellar dweller.  

At this time, I had a full-time job with City of Boston Commission on the Affairs of the Elderly. My mother was, apparently, in her death process in the West Roxbury area (who knew?  There was no one to guide me through this process) and my daughter was in her marriage process in New Hampshire.  I was so stressed I thought I would pass before my mother did.  It was a slow, subtle process of about 5 years.  Every year she had an incident which brought her to the hospital, rehab and then home.  The first year I was advised by the case manager at the hospital that it was the beginning of the end and so I was on my guard….for four more years.  It was the 5^th year that she never made it home.  I called her the Energizer Bunny.

At the end, it was like a switch had been flipped; she was incontinent, and couldn't care for herself. I had to clean up -day and night and then go to work the next day.  I was doing it all.

There's such a burden to caregiving!  No one knows what it's like until they’ve done it themselves.  Kind of like walking a mile in an Indian’s shoes…as the expression goes.

I had aides (certified nursing assistants) to help - I called them my angels.  I cooked for them all, and gave them gold for Christmas. 

 I so appreciated them and couldn’t have done it without them!

My mother had Diabetes.  She was a little Italian Mom.  I'd cook healthy meals, and then she'd add more starch to everything, which, in turn, caused her sugar level to skyrocket.  She wanted to stay home; that was her biggest desire.  She had Macular Degeneration [a type of vision loss], Congestive Heart Failure, Emphysema  [Chronic Obstructive Pulmonary (lung) Disease], Spinal Stenosis [abnormal narrowing of the spinal canal], Osteoporosis [reduced bone mineral density], and Frozen Shoulder [bone]. 

The world of Elder Services is an incredible maze.  I was trying to figure out what was going one with her health, trying to educate myself on services that were available and trying to get the best services for her that I could get.  There was not one person to outline this information for me and I felt like I was in a bumper car, getting bashed around.

Roberta's Advice for seniors in poor health: Coordinate their health care and plug them into life.  Get them connected to a community, whether it's faith-based, at the adult day health center, the housing community, or something else; it doesn't matter which one.   We need each other! 

Isolation is the worst enemy for seniors.  

Roberta Robinson is now the Director for Geriatric Outreach and Marketing for the PACE program (Program for All Inclusive Care for the Elderly), and the Geriatric Division at Cambridge Health Alliance. 

She is a patient advocate in the best sense of the word.

Read a story about a compassionate home care provider, and learn about the PACE program.  Thanks to Roberta for sharing her story.

A patient advocate: This is her partner

Dr. Suzanne Koven's story:

     For many years I've provided primary care for two women in their 70s who have lived together for decades.  Perhaps because of the era in which they came of age, they'd never identified themselves to me as a couple, though it seemed clear that they were.  They finished each other's sentences, took notes at each other's medical visits, and, when I called to discuss one of their test results, both got on the phone.

     I sometimes wonder whether I should have encouraged them to be more open with me about the nature of their relationship, but I sensed this was not what they wanted. I'm still not sure I was right.

     Once, one of the women became critically ill and required months of hospitalization outside of Boston.  The other was at her bedside all day, every day.  The doctor on the case called periodically to update me - progress was at times discouraging - and her companion also phoned regularly.  She always left messages that began by identifying herself as the patient's "roommate" or 'friend."  

     Eventually, because of excellent medical care and, no doubt, the "friend's" loving attentiveness, the patient recovered and was able to return home.  When I got the call with this news, the message was slightly different:  "This is her partner...", it began.

     A small word, a subtle shift, and yet I couldn't help but read volumes into it.  I imagined the woman, after months by her partner's side, after decades of denying their relationship, finally saying to herself, "Dammit, I've earned the right."

     Of course I don't know for sure if that's what she said to herself.  But I do know this:  I received dozens of phone messages every week, thousands very year - and I can't remember one that moved me more.

     Read another story about the healing power of love in a glamorous younger couple.  Thanks to Dr. Koven for this story, reprinted from today's G section of the Boston Globe.

Shared Decision Making and Mike Wallace

Mike Wallace, the well-known veteran journalist of CBS' 60 Minutes, passed away on Saturday.

Working in journalism for more than 60 years, he died at age 93. He had lived for many years with heart problems. He had had a pacemaker installed more than 20 years ago, and had had triple bypass surgery in early 2008.

Experts are becoming more skeptical about many forms of surgery and screenings, particularly heart surgery. The National Priorities Partnership, for example, has identified coronary artery bypass grafts (CABGs) and percutaneous transluminal coronary angioplasty (PTCA), among others, as often unwarranted, and has recommended that healthcare organizations concentrate on reducing them. Yet Wallace was able to live to a ripe old age with the benefit of several heart operations. It's very complex to ascertain whether an operation is right for a certain person. That's why shared decision-making, perhaps with a patient advocate, is so important.

Shared decision-making will be the subject of a forum in Waltham, Massachusetts on April 10, organized by the Massachusetts Health Data Consortium. Dr. Henriette Coetzer and David Veroff of Health Dialog will make presentations for the session, entitled "For Good Measure: Identifying Opportunities and Outcomes for Patient Decision Quality."

For considerations in the surgery decision, see Chapter 3 of my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

25th anniversary of ACT UP: A tribe in desperate trouble

This month marks 25 years since the the start-up in 1987 of ACT Up (AIDS Coalition to Unleash Power), the coalition of gay activists that transformed health care for AIDS. The changes they won in funding to fight AIDS, in the ways medical research is performed, etc., marked an historic event in consumerism: the first major victory won by the grassroots efforts of citizens at risk of a particular disease.

My gay college friend Don may be alive because the gay community acted up since then to safeguard themselves, and to speed the development of anti-retroviral drugs that kept many of his friends healthy.

I hope we in the patient advocate community can one day be equally successful in promoting safer care. As Frank Bruni wrote in the NY Times on March 17: "a tribe in desperate trouble...elected self-reliance over self-pity, tapping its own reserves of intellect, ingenuity and grit to make sure its members were cared for."

After everyone had left: Choosing an Emergency Room

The day after my daughter's Bat Mitzvah in Boston, after everyone had left, my mother asked me if I'd bring her to the Emergency Room. She'd been having pain radiate down her neck. She'd waited until then to ask because she didn't want to ruin my daughter's special day. I wanted the best care for her, and wanted her to get it quickly. She wanted to catch a train to NYC to see an old friend. I called 2 E.R.s to find out how long she'd have to wait. The shorter wait was at a very small community hospital in our suburban home town. I asked the E.R. for their FAX number, and in the car on the way, I called my mother's doctor's office in Atlanta and asked them to FAX her problem list and medication list to the E.R. in Boston.

When we got to the E.R., the problem list and medication list were already there, and they quickly got her in to see a doctor. They gave her an EKG, X-rays, and blood tests to rule out a stroke. And they arranged a specialist at a nearby Harvard teaching hospital to see her on a TV screen - a quick telemedicine consult.

They ruled out a stroke, gave her some quick education about the problem they'd discovered, so she WAS able to catch her train in time. The lessons?: Get an advocate who can put you first. Choose your E.R. Get them the critical information they need.

The stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, come from my personal experiences in my family, my professional work as a hospital consultant, and research for my blog. There are stories of famous doctors who've been patients, and what we can learn from them. There are stories about the health crises of celebrities and public figures, and what we can learn from them.

I've been working for 15 years as a consultant in helping hospitals prevent medical errors, and improve the quality of care. When my father-in-law died from a medical error in 2002, it changed me. I later began writing stories to educate and empower and warn people in Patient Safety Blog. So my interest was first professional, then very painfully personal, and then professional in a different direction, as a patient advocate.

Now my work enables people to partner with their doctors, to get the best patient-centered care.

Human judgment is better: Patient advocates and fatigue alarm

Liz Kowalczyk's recent articles in the Boston Globe highlighted the problem of alarm fatigue in Massachusetts hospitals. The noisy alarms are so often false alarms that staff learn to ignore them. Since most of the alarms are false alarms, ignoring them is usually harmless. But sometimes, of course, the alarms are genuine. One set of disregarded alarms led to the death of Madeline Warner in a Massachusetts hospital. Alarms had sounded for 75 minutes, warning that her heart monitor's battery needed to be replaced. Kowalczyk found that hundreds of deaths had been causes by such alarm fatigue in the last five years; indeed, this probably represents only the tip of an iceberg.

"If there were an obvious solution to this problem, we would have done’" it, said Dr. James Bagian, the former chief patient safety officer for the Veterans Administration hospitals, where he said there have been multiple patient deaths and close calls because alarms were turned off or the volume was turned down. "No one has one."

I disagree. There may well not be a technical solution now, given the current state of technology. Human judgment is better. But most humans in hospitals are busy taking care of numerous patients. A dedicated patient advocate, on the other hand, is focused on a single patient. When family members acting as advocates, or professional patient advocates, insist on a Rapid Response by hospital staff, for example, in a de facto humanly-triggered alarm, about half the Rapid Responses are later ascertained as valid, with the benefit of hindsight. That true positive rate of 50% is far higher than the true positive rate of machine alarms. That is one of the most powerful reasons why people should bring a patient advocate, preferably a professional, into the hospital with them.

Advice to hospitalized patients: Bring a patient advocate with you.

Read another story on hospital Rapid Response methods.

I insisted that a doctor see her again: The effects of dehydration

Myra Fournier's story:

My mom went through a rather "interesting" few days.

She was in the hospital overnight on Thursday for transient ischemic attack (TIA) symptoms, discharged on Friday, and doing VERY well Saturday morning.

At 4:00 on Sat, Guy called me to say that he and the aide can't really rouse her. They were all set to go out after lunch, and then just got weak, couldn't walk, and had to be carried to bed. The nurse checked her out and vitals were fine. She slept all afternoon, but by 4:00 they got more concerned. By the time I got over there around 5 pm, she had a severe headache, slurred speech, and a weak left side.

We called an ambulance and when she got to the ER, I suggested they start an IV of fluids. They disagreed. Instead they did a CAT scan and an EKG. Both normal. They gave her a Tylenol for her headache, which did nothing. By 10 pm she was screaming in pain, confused, and agitated and they gave her a shot of morphine. By the time the needle left her arm, she was sound asleep and peaceful. She was admitted to a room after midnight and had a pretty good sleep. I once again suggested an IV of fluids, but the nurse did not think that mom was dehydrated.

On Sunday they did an MRA (as opposed to an MRI) and an EEG (I think) and both were negative for stroke and seizure. They did labs and ruled out infection. They decided to cut back on her blood pressure meds because her blood pressure was also low.

I went home on Sunday around noon while Guy stayed for the afternoon and we had a private aide for overnight. On Monday morning, the aide reported that mom had a terrible night, did not sleep, and the headache was back. When I got there around 10:30, her speech was slurred and she was listing over to the left. A hospitalist came and decided to order an IV of fluids. I waited with her all afternoon, and she fell sound asleep - so deeply that once again she could not be roused: not by yelling at her, rubbing her arm, or pounding on her chest. However, the IV never came and the nurses and PT just thought she was having a "sleepy" day. Ridiculous.

By 5:00 pm I INSISTED that a doctor see her again and that the IV be started immediately. They started the drip at 5:30 and at 5:40 her eyes fluttered open and she started to revive. They ran the drip all night long - I slept over again - and by this morning she was bright, perky, and not (TOO) confused. Speech and strength on both sides were normal. Headache gone. She walked with her walker and held court with the various staff members!

I took her home at 2:30 and when I left at 4:00, she was busy making dinner plans with friends for THIS EVENING and trying to decide on what kind of little celebration she should have for her upcoming birthday. I asked her if she wanted to nap and she was not a bit sleepy.

I was REALLY stunned that dehydration (plus, low blood pressure probably) could cause these kind of severe complications. I hope she was frightened enough to keep to a healthy eating and drinking regimen. I instituted around-the-clock care again until at least the weekend to get her back on her feet (literally).

Advice to patient advocates: Stay on guard about the indirect effects of dehydration on elderly patients.

Read another story about dehydration. Thanks to patient advocate Myra Fournier for the story.

Tired but wryly triumphant: Culturally competent care for a Somali patient

On an afternoon in late September, Dr. Douglas Pryce and Dr. Osman Harare, the interpreter and patient advocate, emerged from an examining room looking tired but wryly triumphant. They had just finished negotiating, politely but persistently, with a patient who – just as politely but persistently – had refused to allow any blood tests because it was the holy month of Ramadan and he feared that having blood drawn might be a sin.

Finally, they telephoned an imam, who declared that there was no sin. The blood was drawn.

Dr. Pryce says that one of the great joys of working in a hospital like Hennepin County Medical Center in Minneapolis is finding ways to bridge such cultural divides – and knowing that his patients are better off because of it.

Advice to people of another culture: Find a medical provider and interpreter who respect your cultural beliefs and medical preferences.

Read another story about culturally competent care.

Thanks to Denise Grady for the source article in the New York Times of March 29.

The calming presence in the middle of a storm: A breast cancer patient navigator

Chris Ross is a 52 year old tutor from St. Andrews, New Brunswick, Canada who found a lump in her breast; she then had a biopsy that confirmed cancer. "I remember my first meeting with Wendy [Cyr]," says Ross. "My family physician had referred me to the breast clinic at St. Joseph's Hospital and I met with Wendy and my surgeon. There was a lot of information to take in, but Wendy had prepared a complete package explaining everything I was about to go through. I knew immediately that she was going to help me get through things; that she would be a terrific support. She has a way about her, and I just knew."

"Wendy has literally been there for me every single time I've reached out to her," says Chris. "And there was a lot of reaching out! Wendy really personalizes her approach. She helped lessen my worries and understand what to expect. I think she has a tough job – but she just knows how to interact with people, how to reach people."

Wendy can connect newly diagnosed breast cancer patients with a variety of people and resources they might need. "Dealing with a breast cancer diagnosis is complex,” she explains. "Every patient is different; some need financial assistance, some need couples counselling, others have transportation issues or need prosthetics or wigs. There are so many things, outside of their treatment, that can present as they navigate through treatment and recovery. I try to act as a consistent presence. I want our patients to know that if they call me, I will be there to assist them in whatever way I can, and I will arrange contact with the appropriate people."

Chris has completed her treatments and is cancer-free, but she is still in regular contact with Wendy. "I just love knowing that she’s there. Not a day goes by when I don't wake up and think about cancer. But Wendy keeps a close eye on me; if I call her she's right there for me to do whatever she can."

Advice to women with breast cancer: Find a navigator like Wendy.

Read another patient navigator story.

Thanks to Erin Barnes of Atlantic Health Sciences Corporation for the source story in the December issue of Hospital News.

More triumph than tragedy: Voluntarism by a breast cancer patient

When Georgie Mae Taylor died at age 63 on March 2, the event was more a triumph than tragedy.

When she was diagnosed with breast cancer seven years ago, her prognosis was grim: just a month or so to live.

"I decided to keep on trucking, keep on living," she told a reporter from The Eastern Shore News last fall.

"I had too much to live for."

After giving away much of her jewelry and clothing, Georgie did an about-face and opted for an aggressive course to battle her affliction.

The treatment included more than 300 chemotherapy sessions. She researched her disease and all its treatments.

At that point, she became a patient advocate, her husband, Sam, said.

She also continued the fast-lane pace she enjoyed as an antique collector, activist in Baptist and Methodist church groups, and garden clubber. She was also famous for her wedding bouquets.

"She always stayed busy," Jo Sue Parker, her sister, said.

During her extra lease on life, eight grandchildren were born.

She became a major force in the Shore's Relay for Life, an annual American Cancer Society fundraiser, which received $200,000 last September. She organized a breast cancer support group that continues to grow and encompass other forms of cancer. She volunteered to operate a booth for the local Food Bank.

"The one word to describe her," Sam said, "is inspiration. Anyone down in the dumps over a cancer diagnosis could phone Georgie 24 hours a day. She popped out of bed early in the morning to talk to them because they were scared," he said

Laura Vaughan, director of the Barrier Islands Center in Machipongo, described Georgie as "a miracle amongst us."

"As a cancer survivor myself, she took the fear out of it for me," Laura said.

"She lived such a full life with cancer. All the good attributes of the Eastern Shore came through in her."

During her final week, Laura said, Georgie attended the Barrier Island oyster roast fundraiser and showed up at her garden club meeting.

Advice: Be like Georgie.

Read a story of a plucky breast cancer survivor.

Thanks to Brown Carpenter for the source story in HamptonRoads.com of April 1.

The scar adds to my collection: medical malpractice in heart surgery

Blogger Espe’s story:

Dec. 7, 2007:
so, my heart surgery is just around the corner...damn...i've been waiting since june for my heart problem to have some closure and that day is almost here. i thought i'd be shitting it by now, but i'm not. i'm looking forward to the morphine and other prescription pain killers...and the scar....well, it adds to the collection. hopefully, i'll be out of the hospital before christmas. it would really suck having to spend the holiday in the hospital. i don't want to put my family through that again.

Feb. 16:
since today it has been two months since i've been in the hospital. i came in for a heart surgery that was supposed to last four hours, but i've been stuck here for a medical malpractice that occurred during the surgery. i basically ended up with my right leg cut on both sides by a vascular doctor by emergency during the surgery because my leg was swollen. the team who did my heart surgery did not notice my leg until the surgery was over. i've been through near amputations, various procedures including three leg debridements, and i've had to learn how to walk two times already using a walker (actually it's hopping on my left leg because i still can't use my right leg), but hopefully i will be having my skin grafts next week and if it all goes well i may be home two weeks from now.
there's a bunch of other stuff i want to get into about my stay here, but i'm way tired and it's hard to type. my ring and pinky finger have been numb since after my first surgery. i don’t know how long they will stay that way, but they make it a mission to type on the laptop.
i miss so many things, but i will hopefully get to do them all after i get out. i won't be the one driving, though, for God knows how long.

Advice: Have a patient advocate with you in the hospital.

Browse for related stories in the index at the very bottom of this page, or read another heart surgery story.

Thanks to espe for the source blog post.

A fire-spotter to stop conflagrations in human lives: Chad Varah of the Samaritans

Edward Varah, founder of the Samaritans suicide prevention group, died this month near London, at age 95.

He grew up in England, the son of a minister in the Church of England. Just before he was ordained as a young man, he had presided over the funeral of a 13-year-old who killed herself because she mistook menstruation for a symptom of venereal disease.

This was a pivotal experience in his life, as his parish experience showed him that sexual problems drove many to contemplate suicide. He enlisted parishioners to help him field calls to prevent suicides. He started the Samaritans with a newspaper ad pleading for volunteers who would come to his historic London church and use "active listening therapy" to help the hundreds of people who contemplated suicide each day. After formalizing the Samaritans organization, he wrote a guidebook and became a spokesman for the group.

He said he once thought of the Samaritans as fire spotters who "keep watch for the conflagrations that break out in human lives."

Samaritans now operate in more than 40 countries, where it is also known as Befrienders Worldwide. Father Varah was widely recognized for having pioneered the phone help line for those threatening suicide, and he received honors from the American Association of Suicidology and Queen Elizabeth II.

Advice: Volunteer, and help stop the conflagrations in human lives.

Browse the index at the very bottom of this page for related stories, or read another suicide prevention story. Thanks to Adam Bernstein, who wrote the source story in the Nov. 15 issue of the Boston Globe.

I’m in remarkably good shape: A Parkinson’s patient advocate

Parkinson's disease hasn't robbed A.C. Cowan of his ability to enjoy life or fight for causes he's passionate about.

The 82-year-old spoke at a symposium this week to raise awareness about Parkinson's disease at LSU Health Sciences Center-Shreveport's. He spoke to an audience of patients, their families and caregivers, allied health and medical professionals and students

"For my age and the disease, I'm in remarkably in good shape," having lived with Parkinson’s for ten years, he said. "There's nothing I can't do for myself. I drive, eat well and I enjoy my life."

"Now in retirement, I have time to work with the Parkinson's group as an advocate. I've been to Washington, D.C., three times to try and pry money out of Congress" for Parkinson's disease research.

Advice to Parkinson's patients: Live like A.C. Cowan.

Read one of our Parkinson’s stories, or read more from the source article by Mary Jimenez.

Now the West Point grad leads a different fight: Iraq veterans' health care

After his commission from the U.S. Military Academy at West Point in 2000 and basic training, Marc Giammatteo was deployed to Iraq in April 2003. In nine months in Iraq, Marc led 100 combat missions before he was severely injured by a rocket-propelled grenade during a January 2004 ambush. The grenade penetrated his vehicle, tore off the outside half of his right leg from knee to ankle and caused multiple shrapnel wounds to his body.

Over two years he had more than 20 surgeries at Walter Reed Army Medical Center, in Washington, D.C. Surgeons saved his permanently damaged leg. While recovering from his wounds he became an unofficial patient advocate, testified to the Committee of Veterans' Affairs and consulted with the secretary of the Veterans Administration, the secretary and deputy secretary of Defense, and two chairmen of the Joint Chiefs of Staff on behalf of wounded service members from operations Iraqi Freedom and Enduring Freedom.

Earlier this year, President Bush named him to his Commission on Care for America's Returning Wounded Warriors. Under his leadership, the Commission recommends creating comprehensive recovery plans, restructuring the disability and compensation system, aggressively preventing and treating post-traumatic stress disorder and brain injury, strengthening support for families, rapidly taking patient information from the Department of Defense to the Veterans Administration and recruiting and retaining first-rate professionals for the Veterans Administration.

Advice to injured veterans: Become strong advocates for yourself and your fellow veterans, like Marc.


Read another Iraq story, or read more from the source article by Scott Whipple in New Britain [CT] Herald.

Curt was able to get rid of one curse – let’s see if he can get rid of another: ALS patient advocate

Bruce Statham wasn't dying of Lou Gehrig's Disease, he was living with it. For more than a decade after his diagnosis, he lived on, and became a spokesman abut the disease. He helped raise funds for research on ALS, also called Lou Gehrig's Disease, and helped Harvard Medical Students understand what is was like to live with the disease. He died this week at age 39, of complications from ALS.

He worked with the Angel Fund, a nonprofit that raises money for research at the Cecil B. Day Lab for Neuromuscular Research at Mass General Hospital. There, soon after the Boston Red Sox won the World Series, he was invited to introduce pitcher Curt Schilling, who raises money for the National ALS Association. He said, "Curt was able to get rid of one curse; let's see if he can get rid of another."

Advice for survivors: See if you can help others with your disease by being a patient advocate

Read another ALS story, or read more from Bryan Marquard's story in the October 9 Boston Globe.

A steadfast partner: Sobriety and relapse

From Caroline Knapp's memoir:

Michael and I still see each other most nights, but I am taking time to be alone, trying to understand myself as a person a little better before I make any choices about myself as part of a couple.

Choice is the key word here, and it's still a relatively foreign one for me. For the first time the relationship with Michael isn't washed over by waves of alcohol or haunted by Julian; for the first time I feel I'm with him because I've decided to be, not just because I've been buffeted in his direction by circumstances or pain or need. There's great relief in that: I often look at Michael these days with the sense that I'm finally seeing the relationship through glasses that have the right lenses. Sobriety has helped me appreciate his kindness with greater purity and depth, as though it exists in its own right now and not merely as a measure of comparison to Julian. I can't imagine a more steadfast or supportive partner: Michael hasn't had a drink in front of me since I went off to rehab, and he's as bolstering about my sobriety as anyone in AA. These days he does a great imitation of me in the kitchen before a dinner party, compulsively trying to drink a glass of wine and smoke a cigarette and stir a sauce all at the same time, and I appreciate his ability to capture the frenzied insanity of those days and to help me laugh at it too. If I've been through a war, he's been in charge of triage through most of it, and sometimes the gratitude I feel toward him wells up so powerfully I think I'm going to burst.

Advice to drinkers: Find a loyal friend to help you stay sober.

Read one of our stories about a friend as patient advocate, or read more from Caroline Knapp's memoir, Drinking: A Love Story.

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.

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.

She can still recall the day: Lyme Disease misdiagnosis

Diane Blanchard can still recall the day 20 years ago when a tick attached itself to the nape of her neck while she was gardening on Long Island, outside of New York City. She never had the characteristic bull’s-eye rash of Lyme Disease, and her diagnosed was delayed until the next year. Her doctor prescribed a three-week course of antibiotics.

But her symptoms persisted for ten years, until she learned she had a lingering form of the disease. Nine years of on and off treatment with antibiotics followed.

"None of us want to take antibiotics, but if it is the only remedy that is offered at this moment that gives us relief, that allows us to function, then we’re stuck," she said. "We wish we could find a cure. Until we do, we must remain open-minded."

Now she is the co-president of Time for Lyme, an advocacy group.

Advice: Spray your ankles with DEET bug spray before going into the woods, and check yourself afterwards.

Read another of our Lyme Disease stories, or read Stephen Smith’s source story in today’s Boston Globe.