Barbara and Lee Mendel of Denver, Colo. loved to travel and had been living with Lee’s Parkinson’s diagnosis for ten years. On a road trip to Oregon, Barbara began noticing “strange things.” Lee kept misreading road signs on the drive and couldn’t keep the scores straight when they played golf or gin rummy. Soon they learned the cause: Lee had Lewy Body Dementia(LBD). The Mendels were devastated by the news, “Life really changed at that moment,” Barbara said. At first they didn’t want to admit the truth to themselves or others but with time, they both learned to adapt. As they became more open with friends and family about Lee’s dementia, they’ve been surprised by the reactions and lack of knowledge. Even within the Parkinson’s community, many have never heard of LBD and resist talking about the cognitive challenges for people with Parkinson’s. Others often want to attribute symptoms of Lee’s dementia to simply growing older.
Barbara said Lee’s childlike laugh has become more pronounced. She admits getting frustrated, “But if I can laugh about it he laughs too. You have to keep your sense of humor, and I remind myself, it’s not him it’s the disease.”
In 1912, Fritz Heinrich Lewy described neuronal inclusions in the brain of patients who had suffered from Paralysis agitans, now known as Parkinson’s disease. Later, the findings became the so-called Lewy bodies. Little is known about the man who made the discovery aside from the fact that he was born in Berlin, Germany in 1885 and lived there until 1933. After his dismissal by the Nazis on racial grounds, Lewy immigrated to England in 1933 and to the United States in 1934 where he lived and worked until his death in 1950.
Following the recent sad death of Robin Williams, the coroner in San Rafael, Calif. released an autopsy report confirming the presence of Lewy Body Dementia which, according to documents in the report, may have contributed to Williams’ decision to commit suicide last August. Lewy bodies are tiny protein deposits on the nerve cells of the brain. According to the coroner’s report, Williams had been acting strangely before his death. He is said to have kept several watches in a sock and was very concerned about keeping the watches safe.
Angela Taylor, director of programming for the Lewy Body Dementia Association said, “While difficult to distinguish from Parkinson’s disease, which Williams also had, LBD isn’t rare.” It’s one of the most common forms of dementia and affects more than 1.4 million people in the U.S. according to the association’s latest statistics. “People with LBD tend to experience extremely graphic hallucinations that are visual but can also include smells and sounds. Many with the diagnosis have Lilliputian hallucinations which are populated by small people or creatures. They usually don’t find these frightening, just very real.”
Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors or other medical professionals still are not familiar with LBD.
LBD is an umbrella term for two related diagnoses. It refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral problems. While it may take more than a year or two for enough symptoms to develop for a doctor to diagnose LBD, it is critical to pursue a formal diagnosis. Early diagnosis allows for early treatment that may extend quality of life and independence.
LBD is a multi-system disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD experience significant improvement of their symptoms with a comprehensive approach to treatment and some can have remarkably little change from year to year.
It can be tricky to separate dementia associated with Parkinson’s disease from LBD because both have motor symptoms and memory problems. Doctors rely on timing and certain symptoms to differentiate the two. When significant memory problems develop within one year of the onset of Parkinson’s motor symptoms, LBD is more likely. People with both conditions can have hallucinations and fluctuating levels of alertness and confusion, but these symptoms are often more pronounced in LBD.
Treatment for dementia associated with Parkinson’s and LBD is the same. Medications called acetylcholinesterase inhibitors, such as rivastigmine (Exelon) are commonly used to treat memory problems. Doctors may prescribe specific medications targeting hallucinations or adjust Parkinson’s medications. Research is focused on determining the reason for the clinical differences between these diseases.
Barbara Mendel wants to raise awareness across the Parkinson’s community and beyond about the disease’s related cognitive dysfunction. The Mendels have learned to speak up among their friends when they have noticed potential signs of either condition. Their philosophy is the sooner you know what you’re facing, the sooner you can do something about it. Barbara said, “Today I look at Lee with even more respect. I see how he’s been able to adjust to living with Parkinson’s and dementia. But he’s still having fun and hasn’t lost his great self-image. Now that is a special man.”
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Written by Veronica McNamara Sovereign Health Group writer