Lewy Body Dementia

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Robin Williams was a well-appreciated comedian, television personality, and movie star of over fifty movies.  For instance, he portrayed characters such as Mork in the television series Mork and Mindy, Mrs. Doubtfire in the film of the same name, and the genie in the animated movie Aladdin.  Even with such success, he committed suicide in 2014.  The world was shocked.  Why would someone so famous and loved commit suicide?

Initially, we learned Robin suffered from severe depression due to a recent Parkinson diagnosis.  We later learned he was having difficulty at times with motor movement, memory, hallucinations, and delusions.  Only at his autopsy was it discovered he had Lewy Body Dementia.

Lewy Body Dementia is a form of dementia caused by deposits of the protein alpha-synuclein.  When the deposits are in the cortex, it may cause confusion, trouble sleeping, personality changes, anxiety, paranoia, delusions, and hallucinations.  When the deposits are in the brainstem the symptoms mimic Parkinson’s disease with tremors, problems walking, and loss of balance.

Unlike Alzheimer’s Disease, the Lewy body patient is aware of their disorder.  This can lead to severe depression which Robin Williams exhibited.

Williams’ wife described her husband’s disease as the “Sea monster with fifty tentacles of symptoms that show when they want.”  In other words, at times he was normal, but symptoms could appear suddenly.  Imagine his life with Lewy body disease.  Probably at times, he had delusion. He was possibly thinking the television was talking to him personally or convinced someone was stealing from him.  He probably had paranoia and worried everyone was against him.  To make matters worse, he may have hallucinated.  Sometimes he would have hand tremors and lose his balance.

In the movie, Jumanji Williams character was Alan Parrish.  He was transported to the jungle of Jumanji with wild animals chasing him and a mad hunter trying to kill him. Describing the experience Alan shouted, “I’ve seen things you can’t even imagine; things you can’t even see.”  Unfortunately, Williams could say that about his own life with Lewy Body Disease.   He may have had similar experiences with anxiety, paranoia, delusions, and hallucinations.

Dealing with a loved one with Lewy Body Dementia is challenging.  They are aware of their condition which usually causes extreme depression.  They may experience shifts in mood and a change in personality.  They may lose interest in things that were once their passion.  The patient may appear unaffected and then suddenly be overwhelmed with symptoms such as the inability to sleep or agitation in a crowded place.  Dealing with a person with Lewy Bodies Dementia is a roller coaster of ups and downs.

Each victim is different so we must experiment with varied techniques for their care.  Some can’t deal with the stimulation of crowds, which means avoiding restaurants or subways.  Others can’t deal with watching television dramas as they think it is real and the bad guy is after them.  Some find the evening news too stressful.  An alternative might be calming music or a baseball game.

As with all dementia patients, we should have medical information readily available in the event of an emergency.  These include a list of medications, allergies to food and medication, insurance cards, copies of healthcare directives, and contact information for doctors and family.   Be sure emergency room doctors are aware of the Lewy Body diagnosis because sufferers are sensitive to antipsychotic medication.  It would be best for E.R. personnel to contact the patient’s neurologist before administering such medicines.

Caring for a person with Lewy Body Dementia is stressful, tiring, and seemingly unending.  Paul wrote to the Church in Galatia encouraging them.  Those words of encouragement may apply to you today.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.  Galatians 6:9 NIV.

© Copyright 2018 Ronald Milburn

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