 Amid revelations that Robin Williams also suffered from Lewy body dementia, as well as Parkinson’s disease, before his death last year, we shed light on the little-known dementia, often misdiagnosed as Parkinson’s and described by experts as “the most common disease you have never heard of” Show
“Lewy body dementia killed Robin – it’s what took his life,” said Susan Schneider, the wife of Robin Williams, speaking publicly for the first time since her husband’s death. Not heard of Lewy body dementia or LBD before? You’re not alone. According to Dr James Galvin, a neurology and psychiatry professor at Florida Atlantic University: “It’s the most common disease you have never heard of.” Sometimes referred to as ‘Parkinson’s with Lewy bodies’ or ‘Dementia with Lewy bodies’, it’s the second-most common dementia after Alzheimer’s, affecting memory, movement and motor control, while also causing visual hallucinations and severe psychiatric symptoms. Disguised dementia It’s a disease described by Jacqueline Cannon of the Lewy Body Society as “the worst bits of Alzheimer’s and the worst bits of Parkinson’s put together”. The symptomatic similarities that LBD shares with these diseases means it is often initially misdiagnosed as one or the other. It is, however, considered far more brutal and viciously progressive. While the patient is living, the diagnosis process is not conclusive, with tests that are only able to rule out other conditions by deduction. Absolute diagnosis can only be confirmed after death if Lewy bodies are found in the brain at post-mortem examination. Discovering LBD While researching Parkinson’s disease in 1912, German neurologist Freiderich H Lewy (who was a colleague of Dr Alzheimer) discovered small deposits of the alpha-synuclein protein present in the brain cells of people with the condition. These proteins were later named Lewy bodies and are occur in both LBD and Parkinson’s. The deposits develop inside some nerve cells (neurons) in the brain at the synapses, interrupting messaging and causing neurons to die. The patient could develop dementia if they are found in the cortex, or Parkinsonism if found in the brain stem. “A sea monster with 50 tentacles of symptoms” “This disease is a sea monster with 50 tentacles of symptoms that show when they want,” Schneider said of LBD. “We were living a nightmare.” The long list of unpredictable symptoms includes: impaired visual perception and spatial awareness, delusions, hallucinations and loss of motor control. One of the main differences to Alzheimer’s disease is that the patient is aware of the mental deterioration, that they are losing their mind. And the more aware they are of the situation, the more likely depression is to worsen. “Robin was very aware that he was losing his mind and there was nothing he could do about it”Schneider added: “Robin was very aware that he was losing his mind and there was nothing he could do about it.” Jacqueline Cannon said of her father’s condition: “He always used to say to me, ‘I’m losing my mind’. We say to people that LBD is not just about memory. It’s about the other symptoms that go with it, especially the hallucinations.” In the spotlight Like Parkinson’s disease there is currently no cure for LBD, and a need to raise awareness – the case of Robin Williams will no doubt help. Dedicated research centres do already exist, such as the leading Biomedical Research Unit in Lewy Body Dementia at Newcastle University. Professor Ian McKeith, president of the Lewy Body Society, believes there is cause for hope however. In a piece published by The Conversation, he wrote: “Therapeutic trials have been few and far between in LBD because of a combination of a lack of compounds to test, a pre-occupation with targeting Alzheimer’s and a reluctance of regulatory bodies to recognise LBD. All of these are now changing and LBD is increasingly viewed as a malleable and commercially-viable target.” Last MonthNext MonthWhat is Parkinson disease?Parkinson disease is a movement disorder. It can cause the muscles to tighten and become rigid This makes it hard to walk and do other daily activities. People with Parkinson’s disease also have tremors and may develop cognitive problems, including memory loss and dementia. Parkinson disease is most common in people who are older than 50. The average age at which it occurs is 60. But some younger people may also get Parkinson disease. When it affects someone younger than age 50, it's called early-onset Parkinson disease. You may be more likely to get early-onset Parkinson disease if someone in your family has it. The older you are, the greater your risk of developing Parkinson disease. It's also much more common in men than in women.
Parkinson disease is a chronic and progressive disease. It doesn't go away and continues to get worse over time. What causes Parkinson disease?Parkinson disease arises from decreased dopamine production in the brain. The absence of dopamine makes it hard for the brain to coordinate muscle movements. Low dopamine also contributes to mood and cognitive problems later in the course of the disease. Experts don't know what triggers the development of Parkinson disease most of the time. Early onset Parkinson disease is often inherited and is the result of certain gene defects. What are the symptoms of Parkinson disease?Parkinson disease symptoms usually start out mild, and then progressively get much worse. The first signs are often so subtle that many people don't seek medical attention at first. These are common symptoms of Parkinson disease:
Eventually, Parkinson disease symptoms get worse and include:
Parkinson's Disease and Movement Disorders CenterOur center provides compassionate and timely treatment to patients with movement disorders, such as dystonia, ataxia, essential tremor and similar conditions. But our mission goes beyond patient care excellence. By offering educational events and support groups, we empower patients and caregivers to become better partners in their health. How is Parkinson disease diagnosed?Parkinson disease can be hard to diagnose. No single test can identify it. Parkinson can be easily mistaken for another health condition. A healthcare provider will usually take a medical history, including a family history to find out if anyone else in your family has Parkinson's disease. He or she will also do a neurological exam. Sometimes, an MRI or CT scan, or some other imaging scan of the brain can identify other problems or rule out other diseases. How is Parkinson disease treated?Parkinson disease can't be cured. But there are different therapies that can help control symptoms. Many of the medicines used to treat Parkinson disease help to offset the loss of the chemical dopamine in the brain. Most of these medicines help manage symptoms quite successfully. A procedure called deep brain stimulation may also be used to treat Parkinson disease. It sends electrical impulses into the brain to help control tremors and twitching movements. Some people may need surgery to manage Parkinson disease symptoms. Surgery may involve destroying small areas of brain tissue responsible for the symptoms. However, these surgeries are rarely done since deep brain stimulation is now available. What are the complications of Parkinson disease?Parkinson disease causes physical symptoms at first. Problems with cognitive function, including forgetfulness and trouble with concentration, may arise later. As the disease gets worse with time, many people develop dementia. This can cause profound memory loss and makes it hard to maintain relationships. Parkinson disease dementia can cause problems with:
If you have Parkinson disease and dementia, in time, you likely won't be able to live by yourself. Dementia affects your ability to care of yourself, even if you can still physically do daily tasks. Experts don't understand how or why dementia often occurs with Parkinson disease. It’s clear, though, that dementia and problems with cognitive function are linked to changes in the brain that cause problems with movement. As with Parkinson disease, dementia occurs when nerve cells degenerate, leading to chemical changes in the brain. Parkinson disease dementia may be treated with medicines also used to treat Alzheimer's disease, another type of dementia. Can Parkinson disease be prevented?Experts don't yet understand how to prevent Parkinson disease. In some instances, there seems to be a genetic predisposition to develop Parkinson disease, but this isn’t always the case. Research is underway to find new ways to treat and prevent the disease. Living with Parkinson diseaseThese measures can help you live well with Parkinson disease:
When should I call my healthcare provider?Call your healthcare provider if you or your loved one notices a sudden or significant change in symptoms or if mood changes, increased symptoms of depression or feelings of suicide develop. Key points about Parkinson disease
Next stepsTips to help you get the most from a visit to your healthcare provider:
Can you have Alzheimers and Parkinsons at the same time?Alzheimer's disease and Parkinson's disease affect different proteins in the brain, making it possible for a person with Parkinson's to also have Alzheimer's.
Can you have both dementia and Parkinson's?People with Parkinson's disease also have tremors and may develop cognitive problems, including memory loss and dementia.
What is it called when you have Parkinson's and dementia?Parkinson's disease dementia (PDD) is defined by changes in thinking and behavior in someone with a diagnosis of Parkinson's disease (PD).
What is the life expectancy of someone with Parkinson's and dementia?Life expectancy with Parkinson's disease dementia
Research has shown a median survival rate of about 9 years after diagnosis and those with Parkinson's disease dementia had an average shortened lifespan by about 1 to 2 years .
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Alzheimers and parkinsons at the same time
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