Alzheimer’s as seen by a patient who is also a doctor

I am a retired physician and an emeritus professor of medicine. I also have Alzheimer’s disease.

Before my diagnosis, I was certainly familiar with the disease, having seen patients with Alzheimer’s over the years in my internal medicine practice. But I was slow to suspect my own affliction.

Now that I’ve been diagnosed, I can trace my problems back some 10 years, to when I was 76. I had been chairing a monthly program in medical ethics, and I knew most of the speakers and found it easy and enjoyable to introduce them. Then, suddenly, I found I had to rely on prepared material to make the introductions. I started to forget names, though never faces. These kinds of lapses are common in aging brains, so it was easy for me to write them off to “senior moments.”

In the following years, I had coronary surgery and then two TIAs (transient ischemic attacks), or small strokes. My neurologist attributed my problems to them, but my mind continued to deteriorate even though I had no more strokes. The final blow was the occasion one year ago when I was receiving a citation for service in my hospital. I stood up to thank the presenters and found that I could not say a word.

It was my wife who insisted I go to the doctor for a diagnosis. As much as I was in denial and tried to dismiss my lapses as normal aging (doctors are often not willing patients), she knew something was wrong. My internist put me through a few memory tests in the office and then ordered a PET scan of the brain, which predicts Alzheimer’s with 95% accuracy.

After the diagnosis, I was started on a medicine called Aricept, which has been used for many years and which has many side effects. I had two of them — bad diarrhea and appetite loss. I’d had a few Alzheimer’s patients in my practice who had taken this medicine with no benefit, so I wasn’t expecting much. I wanted to abandon it because of the side effects, but my doctor urged me to continue. The side effects disappeared and another drug, Namenda, was added. These drugs are by no means miracle cures, and in many patients they have little effect. I was one of the rare lucky ones.

In two months I was much better, and I am now close to normal. At my worst, I had difficulty speaking, did not know the names of my grandchildren or my doctor, could not add or subtract or find my way home. Now I can do all these things.

We’ve come a long way in our understanding of the disease since Dr. Alois Alzheimer, a German physician, first established a link in the early 20th century between dementia and the presence of plaques and tangles of an unknown material. That material is now known to be the accumulation of a peptide called Beta-amyloid. The leading hypothesis for the mechanism of Alzheimer’s disease is that Beta-amyloid accumulates in brain cells, leading to neurodegeneration. Some pharmaceutical approaches are now targeted at clearing this protein from cells. However, amyloid plaques can be detected only in autopsy, so they have been associated only with people who had full-blown Alzheimer’s symptoms. It is unknown whether these are the earliest biomarkers of the disease. Despite years of study, there is still so much we don’t know.

But there are also things we are learning, some of them from personal journeys like my own. Since my improvement, I have developed a list of insights I’d like to share with others facing memory problems. Carry a small book and write notes whenever there’s something you want to recall later. When you cannot remember a name, make a joke and ask the person to repeat it, then write it down. Read books. Take walks. If you cannot walk, exercise in bed. Draw and paint. Garden, if you can. Do puzzles and games. Try new things. Organize your day. Learn to prepare food, eat, dress, wash and go to bed in an efficient way. Eat a healthful diet that includes fish twice a week, fruits and vegetables and omega-3 fatty acids. A reliable and good-humored book on a serious subject is “The Memory Bible” by Dr. Gary Small.

Don’t withdraw from your friends and your family. This is advice I had to learn the hard way. Afraid of being pitied, I tried to keep my condition a secret, and that meant pulling away from people I cared about. But now that I’ve decided to be open, I’ve been gratified to see how accepting people are and how willing to assist.

For help with your own or a loved one’s severe memory failure, the best source is the Alzheimer’s Assn., with offices in most cities and a central office in Chicago. It has information about caregivers, treatments and research, and it exists to help. Its latest information is sobering. There are currently 5.3 million Americans with the disease. It affects one in eight people over 65, and almost half of those over 85. The number of people in the U.S. with Alzheimer’s is expected to double by 2030.

This rapidly growing problem has prompted pharmaceutical companies to join together in 2004 with the National Institutes of Health to form a partnership called the Alzheimer’s Disease Neuroimaging Initiative. It is developing clinical trials and freely exchanging information about its results. Its findings will be reported to the public in July.

I know that I, like every other human, will eventually die. So I made myself aware of the documents that I needed to examine and sign while I was still able and alert, things like advance directives, living wills and POLSTs (physician’s orders for life-sustaining treatment). I’ve tried to make sure that those who love me know my wishes. When I do not know who I am, or recognize anyone, and I am incapacitated with no chance of improvement, I want comfort and palliative care only.

Arthur Rivin practiced internal medicine in Los Angeles and is a professor emeritus at UCLA.