Without Warning: the Healing Power of a Shared Story

susan-frickBy Susan Frick

At our last Without Warning meeting, Bob, whose wife passed away from younger-onset Alzheimer’s disease several years ago, told me something interesting. He realized that during the 10 years he has been attending Without Warning meetings, he has learned how to share his story. While sharing your story might seem like a small task, I’ve grown to realize that it is a profound and healing skill.

Without Warning, a 13-year-old support program of the Rush Alzheimer’s Disease Center, is for families living with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s means the person is diagnosed by the age of 65 or younger. This is a young age to be experiencing Alzheimer’s disease. Group members might still be working, raising children, driving and have friends who aren’t experiencing such a life-changing disease. Alzheimer’s at any age can make someone feel isolated and different, but these feelings only intensify when someone is young.

‘Agony of an untold story’

The author and poet, Maya Angelo once said, “There is no greater agony than bearing an untold story inside you.” As a group facilitator, I have seen the agony of an untold story in both the person with Alzheimer’s and their family members, and there are numerous reasons their stories are not heard or told.

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Trust, Sensitivity Keys to Doctor-Patient Relationship

patricia-grahamBy Patricia Graham, MD

As a primary care physician and internist, I have spent more than nine years building relationships with patients.

I explain to my patients that I am their coach and their medical detective helping them sort through their medical problems and referring them to specialists as needed. Teaching patients is one of the aspects of my practice that I most value, as it draws on my background in nursing and as a teacher to medical students as an attending physician.

A foundation of trust

Along with teaching, another key foundation of my practice is building trust with my patients. I believe it is extremely important to build trustful physician-patient relationships in order to work together on the challenges of an illness or chronic condition. In order to have a relationship in which my patients feel comfortable with my recommendations, they must first trust me: trust that I am both listening to them and that I’m providing them with the most up-to-date medical advice. In this way, trust is the foundation of compliance and good health, which includes taking medications as directed, following up for cancer screenings, and keeping follow-up visits.

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When Hypothyroidism Symptoms Persist

antonio-biancoBy Antonio C. Bianco, MD, PhD

Within two weeks of each other, two patients arrived in my office with almost identical stories. Both were middle-aged teachers who had lost their jobs months after being diagnosed with hypothyroidism, or an underactive thyroid. They had gained weight, lost energy and had trouble focusing.

Yet their hypothyroidism was under control, as judged by medical standards. They were taking the go-to medication that has been prescribed for hypothyroidism for 40 years, a synthetic thyroid hormone called levothyroxine. Blood tests revealed that the women had normal thyroid-stimulating hormone (TSH) levels, which is the lab value physicians look at to diagnose and manage hypothyroidism. Frustrated over their lingering symptoms, both women had sought second opinions from numerous endocrinologists. All of these specialists assured the women that their lab tests were normal and they should feel fine.

About 15 percent of people with hypothyroidism, including 2 million Americans, remain symptomatic despite following what we physicians call the standard of care, which has been recommended by the American Thyroid Association. Just like my two patients, these patients are fatigued, sluggish. Their cognition is compromised and they gain weight that they can’t lose. They are commonly depressed, and their lives are significantly impaired.

Search for evidence

Physicians often dismiss these complaints from hypothyroid patients as “all in their heads.” I should know. I used to be one of those physicians. Then eight years ago, because of these two patients and their strikingly similar stories, I started to listen more closely to what my patients were saying. As a result, I started to believe them.

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Go Small to Help Realize Your Resolutions

octavio-vegaBy Octavio Vega, MD

At the beginning of any new year, we often have the inner motivation to make new year’s resolutions. This is frequently the time when people decide to make positive changes in their health and overall well-being.

However, sometimes we set ourselves up to bite off more than we can chew and, unfortunately, end up abandoning the resolutions altogether. Instead of focusing on large goals that may be difficult to attain, make smaller changes that will enable you to achieve sustainable results.

Here are some suggestions for small goals that will equal big changes in your health (and could also positively affect other facets of your life):

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Patients, and Providers, With IBD

ottenheimer-harmeier

As physician assistants in the Section of Gastroenterology at Rush, Jenna Ottenheimer and Emily Harmeier often diagnose patients wtih ulcerative colitis and Crohn’s disease, the two forms of inflammatory bowel disease, or IBD.

But their experience with these conditions isn’t just professional: Jenna has ulcerative colitis, and Emily has Crohn’s disease. Both are lifelong, chronic inflammatory disorders of the digestive tract that are treated with medications and often with surgery.

Recently, Jenna and Emily sat down to talk about their unique positions, and how their personal lives inform their work with patients.

Jenna: I’ve been a physician assistant at Rush for almost three years now. My decision to work in this field was strongly influenced by my own diagnosis of ulcerative colitis. After spending many years as an IBD patient, I felt that I could relate to my patients as a provider, and that’s why I decided to work in gastroenterology.

Emily: I had similar reasons for joining our practice as a PA nearly two years ago. While the majority of my patients don’t know that I have Crohn’s disease, I think I bring a unique perspective on topics that can oftentimes be both embarrassing and personal. Having been a patient myself for over a decade, I have learned to be the type of provider who I would want to take care of me.

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Tolerance

toleranceJames Herrick, MD, was a renowned Rush Medical College graduate and faculty member credited with identifying sickle cell anemia. He practiced at Presbyterian Hospital, which later became part of Rush.

Rush archivist Nathalie Wheaton recently came across the following article, from the Presbyterian Hospital Bulletin, about a speech Herrick delivered shortly before Christmas, 1937.

Herrick_from-1910-class-comDr. James B. Herrick, a practicing physician for more than 50 years and a member of the Presbyterian Hospital Medical Staff since 1891, was the speaker at the Sunday morning service in the chapel of the University of Chicago, Sunday, Nov. 13. Some excerpts from his inspiring address on the subject of “Tolerance” are especially appropriate at this season when we are reminded of the angels’ song of peace and goodwill on that Christmas night of long ago.

After pointing out that the doctor has an unusual opportunity of seeing life both good and bad, because “he sees people just as they are,” Dr. Herrick said that “a true doctor has a dual personality. Toward diseases he must be impartially, even coldly, scientific. What is the nature of the illness? What can be done to ameliorate or cure it? Can it be prevented in the future? Toward the patient, however, the doctor must be sympathetic, in the derivational sense of the word — suffering with the afflicted one, whom he views not alone as a ‘case’ but as a thinking, feeling, timorous human being.”

“Tolerance” said Dr. Herrick, “is forbearance; it is the exercise of patience and charity toward one whose opinions or acts we do not approve. While we may condemn the deed, we do not necessarily condemn the doer. Though we believe our opinion and behavior are right, we do not, except by persuasion, education, or example try to induce him to give up his own view or to adopt our practice; unless, it must be added, he is periling society, for there is a limit even to tolerance. Intolerance, on the other hand, is offended by, and unwilling to put up with, opinions that differ from our own.

“But many of the differences that estrange people are not serious; they are largely due to the accident of when and where one was born; they are matters of race, country, custom, environment.

“Surely there are more common characteristics that should unite people than differences that should separate them. No one nation, no one race, no economic, intellectual or social group has a monopoly of the higher attributes such as honesty, kindness, idealism.

“So the doctor, as he grows older, learns to look upon people as, after all, very much alike. The question is not whether one in trouble is of this race or religion or that; whether he is cultured or ignorant. The question is whether the individual is ill or thinks he is. If so, the doctor tries to help him. Should not others, even those in high authority, have some such view of people as has the physician? A more liberal recognition of the brotherhood of man would help solve some of the troublesome problems of the day.”

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‘More Time to Live’ After Lung Cancer Screening

ralph-marrsBy Ralph Marrs

I started smoking at age 18. My dad was a smoker, and he quit so that none of his kids would smoke, but everybody in the family smoked anyway. We were on our own to decide when to quit. There were seven of us, and I was the sixth one to quit. I just got to a point where I thought, “There has got to be something better than this.”

I originally learned about the opportunity to have a lung cancer screening from my family doctor, Jeremy Pripstein, at my annual physical. He explained that the government had a program for a free screening for people who had smoked for a long time.

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