“No matter what people tell you, words and ideas can change the world.” Robin Williams
Hiding behind the initial diagnosis: When I was diagnosed with Parkinson’s 18 months ago, I told my immediate family, a few close friends, and some key people in my research group. Receiving news that you have a progressive neurodegenerative disorder strikes hard in your world and will re-define your life priorities. Mostly, I kept the news to myself. At first I didn’t want to believe it; thinking that there was no way the dopamine agonist would make a difference (so very wrong!). Partly, I was worried either of pity or of prejudice. In reality since going public and accepting the diagnosis, I have received only incredible and lasting support.
Acceptance of the Parkinson’s diagnosis brings clarity, which allows you to challenge this sinister and slowly evolving disorder. You are ready to keep living by reinforcing your emotional well-being, by enhancing your physical strength, by renewing your life-forward strategy, and by staying hopeful, wholehearted, mindful, persistent and positive.
“Sometimes the questions are complicated and the answers are simple.” Dr. Seuss
Remembering Robin Williams (1951-2014): A year ago this month, the world heard the incredibly sad news of Robin Williams’ suicide. We each have our own favorite memories of his genius, whether it was comedy or drama; there was only one Robin Williams.
“Comedy is acting out optimism.” Robin Williams
Parkinson’s and Robin Williams: We also heard that three years earlier he had been diagnosed with Parkinson’s; he had kept the diagnosis a secret. It was revealed in a pathologist’s report that he also had something termed ‘diffuse Lewy body dementia’ in his brain. Parkinson’s affects your mid-brain region that controls movement. By contrast, dementia with Lewy bodies affects your brain in different areas that regulate vision and it leads to spatial-awareness problems, nightmares and hallucinations. Thus, It is possible that Robin Williams had both Parkinson’s and dementia with Lewy bodies.
“I believe in destiny. There must be a reason that I am as I am. There must be.” Robin Williams
Parkinson’s and dementia: Parkinson’s usually presents as a movement disorder. The most common symptoms of Parkinson’s include rigidity; slowness of movement (bradykinesis); postural instability and gait problems; and resting tremor. There is also another side to Parkinson’s that includes cognitive dysfunction, depression and dementia (dementia definition: a persistent mental disorder with memory losses, personality changes, and impaired reasoning). It is estimated that >50% of those with Parkinson’s will eventually develop Parkinson’s-related dementia. This could be a subtle cognitive problem expressed mainly as an executive dysfunction (executive function allows you to manage time, pay attention, plan and organize, remember details, and do things based on your experience). In a subset of people, it progresses to dementia, which is a progressive executive dysfunctional syndrome with attention deficit, fluctuating cognition, and some have psychotic symptoms.
“Make your life spectacular, I know I did.” Robin Williams
Lewy bodies, Parkinson’s and dementia with Lewy bodies (DLB): A culprit in the development of Parkinson’s is accumulation of the protein alpha-synuclein. These aggregated protein deposits in brain neurons are called Lewy bodies [for more information see: https://journeywithparkinsons.com/2015/05/23/the-alpha-synuclein-story-in-parkinsons/ ; https://journeywithparkinsons.com/2015/06/21/of-mice-and-men-endogenous-alpha-synuclein-contributes-to-mitochondria-inhibition-in-parkinsons/ ; https://journeywithparkinsons.com/2015/06/10/a-comparison-of-parkinsons-to-alzheimers/ ]. In Parkinson’s, Lewy bodies accumulate in neurons of the mid-brain substantia nigra, which substantially reduces dopamine production. Loss of dopamine-producing neurons leads to the movement disorder found in Parkinson’s.
Lewy bodies in other regions of the brain can result in DLB. Some of the key clinical manifestations of DLB are progressive cognitive decline, alertness and attention changes, visual hallucinations, and motor symptoms consistent with Parkinson’s. We know that Lewy bodies are found in the brains of people with Parkinson’s. The occurrence of Lewy bodies in DLB implies that DLB is somehow related to Parkinson’s. This further indicates that someone could have Parkinson’s and DLB.
“Thank you Robin Williams for showing the world that one man can make a difference in the lives of millions, while still fighting his own personal demons. You are missed, but never forgotten.” Steven Wolff
Dementia, the ‘dark side of the force’ of Parkinson’s: There is no silver-lining to Parkinson’s but there is substantial hope. Managing the movement disorder is possible with sustained effort and a positive approach to life. Cognitive changes add complexity to living with this disorder; tackle these changes with all your might. Adding dementia to the progression brings a new dimension of severity to Parkinson’s. Your proactive/protective shields are your cherished loved ones, family and friends. Their love, help and hope will allow you to sustain your grasp on this insidious disorder. As always, you still matter a lot; focus on the mounting challenge, and stay you.
“We don’t read and write poetry because it’s cute. We read and write poetry because we are members of the human race. And the human race is filled with passion. And medicine, law, business, engineering – these are noble pursuits and necessary to sustain life. But poetry, beauty, romance, love – these are what we stay alive for.” Robin Williams