Friday, November 6, 2015

The Answer Is Blowing In The Wind on Lewy Body Dementia

Lewy Body Dementia, the dementia of many masks, is beginning to be recognized but not yet talked about as frequentlly as Alzheimers.

Could the answers to this formidable opponent, this destroyer of so many capable and gifted individuals like Robin Williams, Casey Kasen and others not recognized, be within reach -- through more investigation of causes of death and less acceptance of typical diagnosis of Alzheimers and other illnesses causing "brain damage"?

My personal belief is this form of Dementia, LBD, is far more prevelant and may hold the key to other Dementias as it appears to be slower moving or at least less effacing of complete skillsets and abilities. 

It also appears the brain may try to "heal itself" by redirecting messages and "requests" for various actions and spoken words, for a longer period of time than Alzheimers.

My comments in this blog are from the extensive ability we had to live with Lewy Body Dementia as it was developing and to see the results of LBD unrecognized, undiagnosed and working through the challenges of medical professionals, Government appointed Adult Protective Workers, individuals with Masters in Social Work and others being closed minded and non proactive -- non focused on the individual, the situation, the family unit. 

And, as life continues, faced with two immediate family deaths in a relatively short period of time, I post now to celebrate their lives, to celebrate our lives and to believe shedding light on the challenges of living with Lewy Body Dementia is a journey needing telling.

The celebrities had financial ability and families who could live with and try to manage the changes brought on by people who were truly fighting for their lives, for their "selves",for the people they believed they still were even while this "phantom" disease crept deeper and deeper into their very beings.

Yet, they too, did not see, did not realize, especially with Robin Williams, how devastating this disease is for people who functioned highly, were exceptionally capable and could not control, could not minimalize or change what was happening. 

Out of control. That's how they felt. When they had the ability to realize something was happening. Some respond with anger, some respond with despondency and others respond as Robin Williams did, ending what was happening in his own time, his own way.

Lewy Body Dementia needs the type of promotion and recognition of Alzheimers. I've been saying this since discovering Mom had the disease and since early 2013 promoting this to all who read our story.

LBD debilitates and undermines relationships and individuals; it is a cancer in its own right -- eating away at the body and being of everyone it touches.

LBD goes unrecognized and it may have related diseases of the brain we are yet to discover, identify or reclassify.

Whoopie Goldberg has spoken out for LBD.

The families of Robin and Casey are speaking up.

WE NEED MORE.  As a society, we need more. 

Each day our population ages; the world population ages. But aging isn't the cause of LBD; it may allow the disease to progress more rapidly but it may be we all harbor this inevitable brain disease if given enough time.

Should we not want to add years to our lives in fear of this phantom, in fear of this unknown?  

Or should we work to ensure we continue to spread the word about Lewy Body Dementia and eventually find funding for this and other lesser known diseases which may be related, may have similar causes and all negatively affect positive relationships and lives.

Collaboration and not segmentation is needed. Sharing of findings, information, concepts, capabilities within the educational and research community. 

Aligning organizations in the fight against Dementia and related diseases working together, sharing and caring about each positive step, each finding that will reduce, control, adjust, or even eventually eradicate Dementia, in its full range, it's full effects, as has been started within the medical communities seeking treatments and cures for other diseases. 

Please tell someone today to visit the website on Lewy Body Dementia. Here's the click thru.

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