One moment completely lucid, the next moment disconnected. Mickey Berkowitz's type of dementia is severe and confusing
- Doron Kuperstein
- Published in Walla Health
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Sharp fluctuations in clarity, hallucinations, sleep disorders and symptoms reminiscent of Parkinson's: The type of dementia that Mickey Berkowitz is dealing with has now been revealed, a deceptive and complex degenerative disease that was also discovered in Robin Williams' body during an autopsy after his death.
For about two and a half years, his family kept Mickey Berkowitz His medical condition is kept out of the public eye. Now, after it was revealed that one of Israel's greatest basketball players, if not the greatest of all, is dealing with dementia, it is also becoming clear what type of disease it is: דמנציה עם גופיפי לואי, a complex degenerative brain disease that sometimes combines symptoms reminiscent of both Alzheimer's and Parkinson's.
It is a disease that many in Israel do not even recognize by name, even though it is considered one of the most common forms of dementia. It can simultaneously affect thinking, attention, movement, sleep and behavior, and one of its confusing characteristics is its volatility: a person can appear clear and functioning at one time, and in a short time appear confused or disconnected.
"Dementia with Lewy bodies is a very deceptive disease," explains Dr. Nati Blum, CEO EMDA Association, the association for dementia, Alzheimer's and similar diseases in Israel and their families. "There are waves in it. Sometimes the family can see a person who seems clear and functioning, and then a decline comes. This volatility can be very confusing for both the person themselves and the family members."
What happens in the brain when the disease attacks?
The disease gets its name from "Lewy bodies," abnormal deposits of the protein alpha-synuclein that accumulate within nerve cells in the brain. Their accumulation disrupts the normal activity of brain cells and chemical systems involved in, among other things, thinking, movement, sleep, and behavior.
One of the things that makes the disease difficult to recognize is its similarity to other neurological diseases. In fact, the term Lewy Body Dementia encompasses two closely related diagnoses: dementia with Lewy bodies and dementia developing in the context of Parkinson's disease. The distinction between them is based largely on the order of onset of symptoms.
"This is one of the reasons why the disease can be very confusing," says Dr. Bloom. "People hear about stiffness, slowness of movement, tremors or balance problems and immediately think of Parkinson's. On the other hand, there is cognitive decline, so they think of Alzheimer's. But here a combination of both worlds can appear."
One day it's clear, and the next day everything looks different.
One of the most prominent hallmarks of the disease is what is known as cognitive fluctuations. Attention, alertness, and concentration levels can fluctuate significantly throughout the day and even within short periods of time. A person may be engaged in conversation and thinking relatively clearly, and then appear sleepy, confused, or have difficulty following what is happening around them.
Another characteristic is visual hallucinations. These are not necessarily vague shadows or a feeling that something is in the room. In some patients, these are very detailed and realistic visions, for example, of people, children or animals that are not really there.
Sleep can also change. REM sleep behavior disorder, in which a person actually "acts out" their dreams while asleep, can cause talking, screaming, kicking, and jerky movements. Surprisingly, this phenomenon can appear years before other symptoms of the disease.
Along with these, some patients experience symptoms that are very reminiscent of Parkinson's: slow movement, muscle stiffness, tremors, walking with small steps, difficulty with balance, and falls.
"For the family, this can be particularly difficult," says Dr. Bloom. "It's not just about memory. Sometimes you see a change in movement, then confusion, sleep disturbances or hallucinations, and in between there can be moments when the person seems to have come to their senses. Therefore, family members may have difficulty understanding what exactly they are seeing."
How long do you live with the disease?
This is probably one of the most difficult questions a family hears after a diagnosis, and also one of the questions for which there is no precise personal answer.
According to the National Institute on Aging in the United States, LBD is a progressive disease for which there is currently no cure. The average lifespan from diagnosis to death is about five to seven years, but the range is very wide and can range from two to 20 years. The person’s age, general health, and the severity of symptoms affect the course of the disease.
The Lewy Body Dementia Association also emphasizes that it is impossible to take the statistical data and turn it into a prediction for a specific individual. The rate of progression varies significantly from patient to patient.
"It is very important not to turn a statistical average into a clock that counts down," emphasizes Dr. Bloom. "When a family hears five or seven years, it is very natural that they immediately start calculating. But it is impossible to know from this how long a particular person will live. There are people whose disease progresses quickly and there are those who live with it for many more years."
As the disease progresses, more help is usually needed with daily activities, due to the combined decline in thinking and movement abilities. In advanced stages, a person may become completely dependent on others.
And there is another reason why it is important to know that this is the disease.
The accurate diagnosis has another medical significance: People with dementia with Lewy bodies may be particularly sensitive to certain medications, especially some antipsychotics. The NIA warns that such drugs can cause some patients to experience worsening confusion and Parkinson's symptoms, extreme drowsiness, and low blood pressure, and in rare cases, a life-threatening reaction.
There is currently no cure for or reversal of the disease, but there are treatments that may alleviate some of the symptoms. Drugs from the cholinesterase inhibitor family may help with cognitive and behavioral symptoms, and levodopa treatment may help with some of the motor symptoms, although caution is needed here as it may worsen hallucinations in some patients.
The disease that Robin Williams was only discovered after his death
One of the most famous people whose name has been linked to Lewy body disease is the actor and comedian Robin WilliamsBut in his case, it is important to be precise: in his lifetime he was not diagnosed with dementia with Lewy bodies. Months before his death in 2014, he was diagnosed with Parkinson's, and only after his death was an autopsy found to have extensive pathology of Lewy bodies in the brain.
His widow, Susan Schneider Williams, then recounted a whirlwind of symptoms that included extreme anxiety, paranoia, difficulty sleeping, tremors, and problems with thinking. She described how her husband could be completely lucid one moment and lost in confusion minutes later. This is probably why Williams, faced with these severe symptoms, decided to take his own life and commit suicide.
His story has since become one of the most recognizable cases of the disease and an example of the difficulty of identifying it in real time.
After the secret comes another stage in the journey.
The revelation about Mickey Berkowitz comes after about two and a half years in which his family dealt with his condition out of the public eye. Families dealing with dementia often carry two burdens: the disease itself and the effort to hide it.
In recent months, the story of Revital Gantz, Benny Gantz's wife, who is battling Alzheimer's, has also been revealed in Israel, after the family kept the diagnosis away from the public for years. Internationally, Bruce Willis' family chose a different path of measured exposure after his diagnosis of frontotemporal dementia.
But in Berkowitz's case, knowing what type of dementia it is adds another layer to understanding the coping process.
"Dementia is not a single disease," concludes Dr. Bloom. "There are different types, and each of them has different characteristics and a course. In the case of Lewy bodies, the volatility and combination of cognition, movement, sleep, and sometimes hallucinations make coping particularly complex. Therefore, in addition to treating the person themselves, we must also see the family members who accompany them."
After decades in which the Israeli public got to know Mickey Berkowitz through movement, speed, sharpness, and unforgettable moments on the court, the current exposure presents a completely different reality. It also shines a spotlight on a deceptive and insufficiently known disease that many families deal with, away from the cameras.