When Dr. Barbara Lipska’s hand disappeared in front of her face, her first thought was a brain tumor. She understood exactly what that diagnosis would mean because, in addition to losing her first husband to brain cancer and battling breast cancer herself, she had dedicated her life to studying brain abnormalities in rats and the frozen brains of humans as the director of the human brain bank at the National Institute of Mental Health.

Barbara’s instincts were right, several melanoma tumors were growing in her prefrontal cortex and over the course of her treatment, there would be as many as 18 at a time. The moment she lost sight of her hand would mark the beginning of a harrowing journey that involved several experimental treatments including surgery, radiation, and an immunotherapy clinical trial. Her diagnosis should have been a death sentence, and many of the treatments came with difficult and painful side effects, but at the time of this writing, Barbara is fortunately in remission.

While new tumors continued to grow, the treatment caused significant brain swelling putting pressure on the prefrontal cortex and mimicking symptoms of the very dementia patients she had studied in her lab. For months, Barbara experiences cognitive changes in many of the same brain areas commonly affected by dementia.

“Dementia is not a specific disease. It’s an overall term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities.” – Alz.org

People with dementia are often unable to describe what their experience feels like, so Dr. Barbara Lipska’s journey is incredible not just because of her recovery, but her ability to tell us exactly what it was like to live with dementia symptoms with the clear hindsight of someone with regained cognitive ability. She has shared her insights by chronicling her experiences in her novel, The Neuroscientist Who Lost Her Mind.

“It was difficult, at first, to pinpoint the changes in my behavior, because they came on slowly. I didn’t suddenly become someone else. Rather, some of my normal traits and behaviors became exaggerated and distorted, as if I were turning into a caricature of myself.” – Barbara Lipska, NYT

Awareness

A recurring theme throughout Barbara’s experience is the fact that despite being expertly trained in the symptoms and what they meant, she was unable to recognize them in herself. It felt like the world, the people around her, even the neighborhood had all changed rather than her perception. This meant that surprisingly, despite a dire diagnosis, Barbara was calm and assured in her sanity and slightly frustrated that everyone else was causing a fuss. The very part of her brain that was affected was also the part that was responsible for letting her know something was wrong. She is able to describe her experiences now with an awareness that simply was not possible while she was experiencing symptoms.

“Strangely, I wasn’t worried. Like so many patients with mental illness, whose brains I had studied for a lifetime, I was losing my grasp on reality.

 I felt certain that there was nothing wrong with my brain. This wasn’t just wishful thinking, or extreme denial; my worldview made perfect sense to me. I still saw myself as a scientist — a master of the rational — and was in fact still working hard on other people’s brains, not able to see that my own was crashing.” – Barbara Lipska, NYT

Surprisingly, for Barbara, it was the look on other peoples faces and the changes in independence and routine that caused concern and stress rather than the fear of a progressing disease. That very fact that stopped her from being afraid while she was in danger is the thing that scares her the most now that she is out of harm’s way.

“I lost insight. I lost awareness that I am not behaving normally, which is the most frightening thing now and it will be probably until I die because when it happens again, if it happens again, I will not be able to recognize it.” – Barbara Lipska, Salon

Confusion

In addition to starting with visual hallucinations like the loss of her hand or face-blindness, Barbara had difficulty recognizing things and places she knew well. As an athlete, Barbara loved to run, bike, and swim, but often found herself lost in her own neighborhood or on familiar paths.

“I would read a paragraph and forget it instantly. I got lost driving home from work on a route I had taken for decades. I went running in the woods outside my house, barely dressed.” – Barbara Lipska, NYT

Due to the distorted awareness, she wondered why things had moved or who had moved them rather than accept her own difficulty getting around. This caused mistrust with her loved ones who, she believed, were moving things around in her home in a conspiracy against her. Her overwhelming feelings when confused were more around irritation than fear.

Personality Changes

Barbara was always a strong and assertive woman, but as her brain swelled, she became impulsive, impatient, and easily irritated. The focus required to bond with others was simply not possible.

“I had no time for anything — not even for the things that I really enjoyed, like talking to my children and my sister on the telephone. I would cut them off midsentence, running somewhere to do something of great importance, though what exactly, I couldn’t say. I became rude, and snapped at anyone who threatened to distract me.” – Barbara Lipska, NYT

Although these personality changes were painful for her family, they ultimately saved her life. The people around her were able to try and make sense of the confusion and other symptoms to a point, but the change in her personality caused them to bring her back to the doctor for a scan and discover the extreme swelling in her brain. Although the doctors didn’t ask about personality changes, they were the key to her recovery showing just how important the insights of friends and family can be.

Body-Budgeting

Barbara’s irritability also came from the fact that she had difficulty anticipating the needs of her body. There was no longer a build up towards hunger, fatigue, or even the need to urinate that she had once experienced. With the inability to plan ahead for her body’s needs, urges came on quickly and furiously shutting down her ability to focus on anything else.

For example, once, Barbara became hungry while out with her family. For her, the hunger demanded that she get home and cook dinner and she was unable to think about anything else. Although she experienced confusion in the kitchen and trouble finding things, her family’s offers to help felt like getting in the way of her single focus to solve the problem. She was frustrated and short with them, even though they were presenting solutions to the problem because her body-budget was out of alignment and she simply could not spare the energy to hear them.

 

It can be emotionally hard on caregivers dealing with dementia patients, particularly when they are members of your own family. It is difficult not to take things personally particularly when the people you love become irritable and short and can’t explain why. Barbara’s memoir helps create context for some of this behavior, the demands on her body and attention.

“The underlying causes of mental illness are rarely as clear as metastatic brain cancer. And yet I felt I understood for the first time what many of the patients I study go through — the fear and confusion of living in a world that doesn’t make sense; a world in which the past is forgotten and the future is utterly unpredictable.” – Barbara Lipska, NYT

Ultimately it is important to remember that mental illness does not always reflect the patient’s full intentions, and certainly not their love for their family, but a wide range of very real demands on their body and mental faculties.

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