Don’t Be Too Quick to Diagnose Yourself

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Learning all you can to manage your health is clearly a good thing. Today we have more at our disposal to learn a huge amount about our health status, how to intervene to avoid a crisis, and optimize our health. But recently, I’ve seen friends make assessments of their health status that were dead wrong. One could have died. Another might have had cancer, but she thought otherwise. Maybe their doctors would have missed the seriousness of these symptoms too, but I have to hope that, in the right hands, they would do better than you and me.

When a Symptom is Thought to Be Part of a Chronic Condition

A close friend of mine who has had MS (multiple sclerosis) for decades has suffered from MS fatigue, a well-known issue for people with MS. To some extent, there is some nihilism about the fatigue in the MS community. According to the National Multiple Sclerosis Society, fatigue occurs in about 80% of people with MS. The Society cautions that outsiders may misread the symptom as “depression or not trying hard enough.” In addition, the MS fact sheet makes it clear that there is no scientifically proven treatment to deal with this symptom. So letting it be may be what people with MS do.

But while my friend was visiting, I watched him make that miscalculation, attributing fatigue to a flare or worsening of his MS. He could have died. Two weeks ago, I met him at Penn Station, for a weekend visit. He looked bushed. I immediately grabbed his suitcase and got no resistance. We went for a meal and he talked about his “MS fatigue.”

We learned the hard way that his fatigue had nothing to do with MS. He reported bouts of dizziness. We stopped to sit down several times when he was walking. Two hours later, he fell down on a NY Subway platform. When EMS got to him, his blood pressure was down to 70/40 and he was rushed to an ICU. There, the doctors spotted a serious electrolyte imbalance. He could not have managed any of this on his own. We are all thankful that he is alive and for the hospital and emergency medical care that he got.

The culprit in the collapse appeared to be a change in his blood pressure medication. Weeks ago, his doctor had added on a second medication because the first medicine didn’t control it. That medication proved ineffective so the doctor substituted another. It brought his blood pressure down too far. After he was stabilized and rested in New York, I accompanied him home, which is out of state. He’s not out of the woods yet. He still has his blood pressure pills to sort out, which he is doing with his doctor on a schedule that the doctor, not him, is arranging. He doesn’t need another health crisis.

What Looks Like Belly Fat Is Not

I also watched a dear friend attribute her bulging abdomen to postmenopausal weight gain. Never mind that she is serious about exercising and eating nutritiously. Are women so hung up about weight that we cannot realize when a change in our bodies is concerning?

What finally got her to a doctor when a friend noticing a far more swollen abdomen after not seeing her for one month.

The result: she had an 18-pound benign ovarian cyst. Here’s a similar story that articulately shows how women are quick to attribute abdominal bulge to weight gain.  Thankfully, both women had the cysts removed. In both cases, the cysts could have masked cancer.

Not Everything is A Thyroid Problem

In my own experience, I have wrongly attributed feeling hot and cold, fuzzy, or confused to my thyroid being out of whack. Like many women, I have hypothyroidism that is corrected with thyroid medicine. I have certainly had to make changes to my  medicine over the years. But this year, I learned that a urinary tract infection was the likely source of the hot-and-cold and fuzziness – and not my thyroid. I’ve seen older women in nursing homes get loopy with a urinary tract infection, with doctors simply guessing it’s dementia. Like fatigue and feeling fat, feeling hot and cold or fuzzy feels nonspecific, vague, and innocuous symptoms – perhaps something to put aside – or something that it is not at all.

Recognizing the Problem

The patient empowerment movement has made great strides in educating people about illnesses and helping us optimize our health and medical decisions. But there are limitations that we need to be cognizant of. If my fatigued friend with MS had not gotten to the hospital in time, he could have died. How long would it have taken my friend to see a doctor about her large, possibly malignant, ovarian cyst? Do we really always have the best medical information to analyze our symptoms? Can we read laboratory results and radiology scans as well as our doctors? Yes, we should have all that information because it is our’s and valuable in disease management, but having information at hand is not tantamount to knowing medicine.


Acclaimed Books, Films, and Projects About
Alzheimer’s Disease, Other Dementias, and Memory Loss

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Books, films, and innovative projects on Alzheimer’s disease, dementia, and memory loss are growing. I have assembled a short list of them.There are many foreign films, particularly from South Korea and Japan that are excellent. I hope that US distributors make them easier to get. Please feel free to add more in the comments section after this post.

Anne Davis Basting. Forget Memory: Creating Better Lives for People With Dementia. As Basting writes: “Wrestling with the meaning and role of memory in our lives can help us to understand our fears of its loss – and to imagine how investing in a “cultural cure” (raising awareness and reducing stigma) can go a long way toward relieving the symptoms of memory-related diseases and conditions.”

Anne Davis Basting. The Penelope Project. Innovative theater project. As Anne writes in her blog: “After 2 years of explaining, I think I finally made sense. This show is about telling the vast majority of America that they are wrong aboutold people and retirement communities. Regardless of disability –this is and can be a place of growth and learning. Like Penelope, we have dignity, complexity, cunning,wisdom, nobility – even if the world simply thinks we are waiting and doing nothing.”

David Shenk. The Forgetting: Alzheimer’s: Portrait of an Epidemic. If you  read one book on Alzheimer’s, this is an excellent choice. Shenk is an excellent journalist and storyteller. Also available on PBS as a film in English and Spanish.

Hilda Goldblatt Gorenstein. Hilgos Foundation. I Remember Better When I Paint. 2009 documentary that shows how creative arts may help Alzheimer’s patients re-engage in life, through painting, visiting art museums, and performing music. Available on DVD.  Youtube trailer for film.

Lee Jae-han Director. Eraser in My Head also called A Moment to Remember. Outstanding 2004 South Korean film. Available for download from South Korean websites.

Memory Bridge. The Foundation for Alzheimer’s and Cultural Memory. Memory Bridge creates programs that connect people with Alzheimer’s disease and related dementias to family, friends, and other people in their local community. Memory Bridge also creates programs that show  the depths of memory that dementia does not erase

Nancy L. Mace, Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. (A Johns Hopkins Press Health Book) now in its 5th Edition. Many consider this the best caregiver’s guide.

Writing About Alzheimer’s and Dementia Gets Complicated

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Now that I have spent three days listening to expert neurologists, demographers, caregivers, and policy people talk about Alzheimer’s, I come away from the meeting with a sense that the story is complicated, and that I hope it is not reduced to talking points and sound bites. I didn’t feel that it was at the meeting, but I can see how reporting could go awry, and not really help readers or society out.

I don’t want to cover Alzheimer’s disease pursuing the “awareness” route, namely pressing how many millions of Americans have the disease, and how unabated, with the graying of America, these numbers will rise astronomically. There is no cure for Alzheimer’s disease. Existing drugs are not all that beneficial, and when they help alleviate symptoms, it seems to be for a very brief window, in a subset of patients, that nobody has convinced me you can predict. Are we at square one? Should we grab at any way to mobilize the troops for the disease?

There’s more negative news: clinical trials for years have been negative and clinical trial enrollment is poor. Can it be improved? Should I promote enrollment in clinical trials? What might a patient gain from participating in a clinical trial? What about informed consent? How do patients with Alzheimer’s disease give informed consent?

Is using amyloid as a biomarker something that should be abandoned because reductions in amyloid have not shown improvements in the disease? What is the state of the science?

What about labeling patients with mild cognitive impairment or Alzheimer’s? Is mild cognitive impairment an entity that is meaningful, or should it be discarded? Some speakers at the Alzheimer’s disease forum were skeptical about the classification, which is not used in many parts of the world. Will mini-screens being in primary care offices become popular because experts and advocacy groups say that they will reduce stigma and work effectively? Under what conditions, could Alzheimer’s disease be overdiagnosed? Remember, older people are on many medicines, they can have electrolyte problems, hearing problems, and other conditions that could impact on diagnosis.

What kinds of protections are in place for people? There is a big push by pharma and the Alzheimer’s Association to be certain to record an Alzheimer’s disease diagnosis in a medical record. That may seem relatively innocuous for old, retired people, but could some people lose jobs, lose health and long term care benefits, be barred from housing? What is the upside to getting a higher count of Alzheimer’s patients? Do the benefits outweigh the risks?

I also think that battles over Medicare need to be discussed with the possibility that many more Americans are likely to be afflicted with Alzheimer’s. Where will they get care? How do Americans want it to look? Will Alzheimer’s patients be warehoused? Can community programs manage people with end-stage Alzheimer’s?

Should innovative non-drug approaches in the arts be funded more widely? How can we reduce stigma about Alzheimer’s disease? I’d like to know a lot more about what is happening today to people with advanced Alzheimer’s disease. Can they find placements? Where? What are equitable ways to fund Alzheimer’s and dementia care?

Long Term Care

How should the country support long-term care? Should children be taught, as they are in lower school, in some parts of Japan, about caregiving, dementia, and Alzheimer’s? What about minorities, lesbian, gay, bisexual, and transgender people with Alzheimer’s? What about aging single people, who are all over America, and growing around the world? What services are available for them? How will we plan for them?

Alzheimer’s disease issues do not exist in a vacuum.

People should be aware of all of these issues, as people think through a national plan for Alzheimer’s disease and think through federal and state policy. I am intrigued that some countries have national plans for Alzheimer’s and I hope to write about them. Perhaps they will be instructive for the US. Far more patient stories need to be told to understand the complexities.