A Conversation with My Wife's Neurologist

While Alzheimer’s seems to be growing in epidemic proportions, my gut tells me that the fear of this disease is exploding even faster. So I decided to share this concern and others with the one medical expert I personally know, Dr. Steven Cohen. He was my wife Martha’s neurologist for 17 years. It seems only appropriate to have this in-depth conversation now, since June has been designated Alzheimer’s and Brain Awareness Month and June 21st as The Longest Day.

“Worry is a common problem in our culture,” Dr. Cohen says. “Not just about Alzheimer’s, but worry, worry, worry in general. I tell those worrying about Alzheimer’s that no one can predict the future; all any of us has is the present moment in which we should make the most of.”

A practicing Jew who until 15 years ago was an atheist, Dr. Cohen shares this story:

One evening an old Rabbi told his grandson about a battle that goes on inside people. He said, “My son, the battle is between two 'Souls' inside us all.

“One is The Nefesh Habahamis (or animal soul): It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

“The other is The Nefesh Hoelokis (or G-dly Soul)It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith."

The grandson thought about it for a minute and then asked his grandfather, "Which soul wins?"

The old Rabbi simply replied, "The one you feed."

“This story and many other ideas have taught me a great deal about human nature,” Dr. Cohen says. “I’ve told my patients that something may actually be worse than Alzheimer’s, and that is worrying about it. They could spend the next 30 years worrying about getting this disease and then be hit by a bus at age 100, and as a result of all their worry they will have experienced a much less enjoyable life.”

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That advice seems much easier to say than follow, I told Dr. Cohen. “Martha and I did find that meditation helped diminish our anxiety. What suggestions do you have for how not to worry?”

“For those who tend to worry,” he says, “I would avoid watching the news or reading the newspaper, or at least limit it. I know some people who have the TV on all the time at home. The media is geared to bad news and has the potential of getting us into the habit of worrying. Some can handle it, others can’t. Remember…which soul do you want to feed?

“But sources of worry can be more complex than that. How I discussed this with my patients depended a lot on their knowledge and sophistication with regard to psychological issues. Typically, though, I would explain the relationship of emotions to their sources—that is, to their thoughts and experiences—and teach them how to be ‘mindful’ of these. This is a mental process by which you attempt to be aware of what is occurring in your mind, consciously and subconsciously. It can be difficult to implement but with practice it’s become almost automatic for me. This process can help you uncover the underlying issues.

“Sometimes, though, these underlying issues can be subtle and deep-seated, triggering subconscious and conscious thought from one’s past experiences. The best example here is a post traumatic stress disorder (PTSD) for someone who’s been in combat.

“I have a dear friend who was in Vietnam and who is a physician in St. Petersburg. The first time he went to Bayfront Medical Center, the trauma helicopter was landing on the hospital roof. He immediately threw himself to the ground and started to look for his rifle. In Vietnam he and his mission team were getting into their helicopter when they were ambushed by the North Vietnamese. Their team leader was shot in the chest and died in my friend’s arms. Fortunately with his training, my friend understood exactly why Bayfront’s helicopter triggered this alarming reaction and he was fine after that.

“Here’s another example, a personal one.  When we moved here, I was 40 years old and my girls were four and five. One of them had a homework assignment that involved using white paste in a jar with a brush in the lid. When she opened the jar of paste, I got a whiff of the smell and immediately became nauseous and vomited. Fortunately, I was in touch with my subconscious thoughts and realized that an experience from my first grade had been triggered—I had been physically and psychologically abused by my first grade teacher. Realizing the cause of my nausea, the odor of that white paste didn’t bother me again.

“I understand all this can get complicated. My final advice would be that if worry, fear, anxiety, or depression is impairing your behavior and relationships, a professional counselor could be of real help.”

Dr. Cohen, 71, is rather unique among neurologists. He spent the first nine years of his career in neurological research at Johns Hopkins and then decided to go to medical school there. He subsequently opened his practice in St. Petersburg, where he retired last fall after 31 years. His residency was in both pediatric and adult neurology, but his practice was mostly adults.      

As a caregiver too often frustrated over the course of 17 years, I’ve seen little or no advance in reversing the course of Alzheimer’s. (Martha had just turned 50 when diagnosed in 1997; our three children were still in high school and college.)

Dr. Cohen disagrees with me. There’s a better understanding today, he says, of what he calls the “mechanics” of the disease. After many failed clinical trials, “we understand much better the bio-chemistry genetics, the patho-physiology, and the neuro-pathology. This knowledge will eventually lead to effective treatment and prevention.”

Don’t ask me to interpret what he just said. I’ll take Dr. Cohen’s word for it and be glad that someone in the know sees progress being made, however slow and hidden to this layman’s eye.

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I have more questions for Dr. Cohen…

Me: I saw a headline not long ago: “Burnout among caregivers is rampant.” Are you seeing any advances by the medical community in addressing not only the needs of those disabled by Alzheimer’s but also their caregivers?
Dr. Cohen: This is gradually changing in a positive way. When I contrast my daughter’s medical education to the one I received there is much more emphasis today on the psycho-social aspects and psychological needs of patients and caregivers. However, I think medicine still has a long way to go.

It’s highly dependent on the particular medical personnel involved in the care. Many physicians are attuned to these needs of patients and families and help as much as possible. Unfortunately, some physicians are highly educated ‘technicians’ who pay little attention to the psychological, emotional, and spiritual needs of patients and families.

A major obstacle is the pressure that physicians are under to see more patients in less time. Medicine has become an industry, and more and more doctors work for hospitals and corporations where the bottom line is too important.

Me: How critical is a correct diagnosis? If someone is losing their memory and thought processes, what difference does it make what you call it?
Dr. Cohen:  It’s extremely important because there are other entities that can mimic Alzheimer's disease, which often are treatable. A thorough history and physical examination, along with a neuro-psychological evaluation, can be useful in coming to a correct diagnosis. It’s important to see a neurologist or psychiatrist who’s experienced in making the diagnosis.

I once saw a healthy man in his 70s who was told he had Alzheimer's disease. His wife already had started looking for a nursing home. When he came to me and I went through his complete medical history and medications, I discovered that he was over-medicated with one of his prescriptions. That was causing his confusion. When this medication was stopped he quickly returned to normal. Sometimes sleep apnea, which is very easy to fix, can cause significant memory problems, and so a sleep history needs to be taken.

Me: What do you suggest for those in their 30s, 40s, 50s, and 60s as to things they could do now to possibly ward off dementia, or at least improve the odds?
Dr. Cohen:  No one knows for sure. However, my bias is that one should have a basically healthy and enjoyable life as much as possible. I doubt that any specific dietary or lifestyle changes will make a difference. Regular medical care is important because other things can contribute to Alzheimer's disease and make it worse.

It’s also important to “not worry about it," as I’ve told many patients who one day couldn't find their keys or purse and start to think, ‘Oh my, this may be the beginning of dementia.’ Or every time there is a slight memory lapse, such as a word or a name, they become quite anxious.

Me: I’ve seen the distressing statistics regarding Alzheimer’s in the U.S. Such as 22-million people directly affected today, including those with the disease and their family caregivers, according to the latest figures from the Alzheimer’s Association. 28-million are anticipated by 2025 if there’s no intervention. To what do you attribute this epidemic growth?
Dr. Cohen: I take all statistics with a grain of salt. You know the old saw: “There are lies, damned lies, and statistics.” It’s impossible to control all the variables with human conditions. Such increases cited are related to several factors. First, the medical community is much more aware of the diagnosis. Secondly, we have a population that is getting older and this is an illness that largely affects older individuals. Also, while the prevalence of the disease is probably increasing, we have no way of knowing the effect of future discoveries, which could certainly decrease or eliminate this terrible illness.

Me: You may remember when Martha was diagnosed in 1997 that aluminum was the buzz as a possible cause of Alzheimer’s. I threw out all our aluminum pots and pans and searched high and low before finding a deodorant not containing aluminum. But within a year or so that was debunked.
Dr. Cohen: Exactly. I know a lot of people who did what you did. It was a flawed study. 

Me: Why do you think two out of three Alzheimer’s victims are women?
Dr. Cohen: I have no idea.

Me: When Martha moved into a nursing home, she was unable to talk and take care of herself, and soon was unable to walk. Do you think someone still retains their “personhood” when reaching such a stage?
Dr. Cohen: Just because someone can no longer interact and function in ways that we consider “normal” doesn’t mean that they have lost their humanity. We have no way of knowing how much these individuals understand and this makes it even more important to approach them with kindness and compassion.

For example, I saw a video of a man who was lethargic and incapable of communicating and caring for himself. The staff discovered the music that he liked and started playing it for him. His response is remarkable. (You can see that video clip by clicking this link.) 

Me: Much of my life I thought illnesses and diseases were physical issues that needed to be addressed as such. I suspect I’m not alone in what I thought. But our experience with Alzheimer’s showed me that emotional, psychological, and spiritual issues also were embedded, not only within Martha but also within our children and me. Things like bitterness, depression, impatience, alienation, stress, anxiety. What impact do you think these kinds of issues—whether positive or negative—can have on the brain and nervous system as well as on the body?
Dr. Cohen: They can have a marked effect. The stresses of modern life, for example, can make the symptoms of dementia worse because of anxiety and/or depression. Many excellent books are written on this. A couple of layman-friendly ones are The Stress of Life by Dr. Hans Selye and The Divided Mind: The Epidemic of Mindbody Disorders by Dr. John E. Sarno.  

Me: To be told, “You appear to have Alzheimer’s disease,” can be a shock not only to the person receiving the diagnosis but also to their loved ones. It certainly was for Martha and me. What are the initial comments you might say to the patient and their prospective caregiver?
Dr. Cohen: I tried to sense what the patient and family needs to hear. Some need to go into a place of denial for a while, and for others knowledge is helpful. I tried to let the patient and family lead the discussion, and I did my best to reassure them that this diagnosis doesn’t mean their life has ended.

(Note: If you’ve read my book, you may remember that when Martha and I were told she has Alzheimer’s, I described the doctor as being stiff, formal, cerebral, and cold. Dr. Cohen was Martha’s doctor and had tested her, but on the day we were scheduled to get the test results, he’d been called out on an emergency. Another doctor handed us the results.)

Me: You grew up in Chicago in a non-practicing Jewish home. You considered yourself an atheist until you encountered an approach within the Jewish tradition that struck you by how closely it echoed the basic principles of psychiatry. Apparently that caused you to reevaluate your faith in a deep, continuing way. Did this have any impact on the way you approached a patient and their caregiver? Not the medical evaluation so much as, say, your “bedside manner”?
Dr. Cohen: Absolutely yes. I always considered myself compassionate. However, through studying Judaism I was presented with excellent role models and ideas as to why compassion is so important. I also was able to see medical care in a much broader human perspective.

Thank you, Dr. Cohen, for making time to share your insights. I suspect many readers will find these informative and helpful.

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I had an enjoyable conversation recently with two journalists on New York City’s Catholic TV network. I was able to share highlights of our family’s 17-year odyssey through Alzheimer’s. If interested, you can watch it on this program called ‘In the Arena.’

Thanks for tuning in,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1  My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Using these stamps one-by-one can add up: the cancer fundraising stamp to date has raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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