Robin Williams’ Legacy

1/3/18

Robin Williams will be remembered by the general public for his “unearthly” spontaneous comedic wit as well as superlative acting in movies that include Dead Poet’s Society and Good Will Hunting (I loved both of these, but would also include another personal favorite, the classic comedy movie RV). 

In the PD world, I believe his legacy has been “etched in stone” thanks to a letter written by his wife, Susan, to the Neurology journal.  I posted this link of my PD facebook page last week.  It has been viewed over 1000 times and has been shared 11 times.  For my FB page, this is an enormous response, which made me wonder: Why?

One of the reasons is Williams’ popularity and the tragic nature of his death.  There has been a great deal of speculation about his illness and what may have motivated his actions at the end.  Susan fills in the blanks in a thoughtful, informed letter she sent in hopes that, by doing so, awareness could be raised that will help others in the future.

So, the second reason is that, by sharing Robin’s experience in painful detail, she has done the PD and Lewy body dementia worlds a great sevice.  As an advocate with (at least) mild cognitive impairment, the distinction between PD and dementia with lewy bodies (DLB) is something I have been personally interested in for almost ten years.  It motivated me to write a book on this subject that included my personal experience.  It led to my relationship with the Lewy Body Dementia Association (LBDA) and participation in a webinar designed to build awareness about LBD/DLB in the Parkinson’s world.

The type of dementia experienced by most people with Parkinson’s (PwPs) falls into the LBD category.  This is something all PwPs who want to be active participants in the management of their disease need to know as 85% or more of PwPs will experience LBD/DLB during their lifetimes.

LBD is not the same thing as Alzheimer’s (AZ).  LBD is the second leading type of dementia after AZ.  It is a terminal condition.  LBD falls into a category of illness called “atypical parkinsonism”.  These illnesses have symptoms similar to PD, but the causes and treatment are different.  Some medications used for PD can be very harmful to people with atypical parkinsonism, therefore it is very important to get an accurate diagnosis.  This poses a problem as “parkinson’s plus syndromes” (as they are also known) are usually difficult to diagnose.  This is yet another reason why it is crucial to work with a movement disorder neurologist as opposed a general of different specialty neurologist.

Awareness around this subject is growing which is a very good thing.  For more information, visit the LBDA website.