Editor’s Note: Sharon has asked us not to edit her story to help the reader understand some of the effects of the illness that she lives with everyday.
mine name is sharon and i have been diagnosed with lewy body dementia, the only form of dementia that is terminal and is hte most misdiagnosed form of dementia, 2nd onoy to alzheimers.
i am a college grad, and for some reason, it is foudn that lbd chooses peopel with higher eduction backgrounds. no one knows why. it is not genrally inherited execpt for the scandinavian hertiage is. my dads dad was danish, his mom swedish. several of his pateranl uncles had it but hten it was called nervous breakdown. daddy was diagnosed at 68 years old, and died les than 2 yrs later. each genertion starts showing symptomsa decade earlier, daddy strted his symptomsin his late 50’s me in my late 40’s.
lbd may have parkinsons symptoms, the shakes adn the drops, we have unexplained falls. we lose track of our thoughts, and then may jump back and forth when in converstaon. at times we are perfect , other times, we seem ’out of our heads’. we cannot control our rages and our morality is lost, as the frontal lobe of hte brai si hte first andmost adversly effected. meaning, we forget the differecne between right and wrong, sexually appropriate comments and actions, etc.
it is scary, i have been driving home as i havnet lost my fprivlites yet siince i am in early stages, and forget how to get home. thank goodnes for gps that has GO HOME button.
ihave a service dog sparkles who helps by keepig me calm and focused. seh was a foster dog from a puppy mill and abused and as seh came out of her shell, she helpted me regain some confidnece to do things alone again. giving me belovd husband some alone time.
i am scared, i am 52, now that i am going to die a slow horrible death, where i am going to lose my ability to communicate, my ability to feed myself, to walk to the bathroom, to take care of myself. we all are goingto die but hwen ou watch your strong 6’3’’, 240lb dad lose 80 lbs, in less than 1 year, go from wlaing, talkmg and laughing to bedridden and feeble and unhelathy andnow that you are follig his footstps, no cure, no good treatment maybe some meds to help with the symptoms but not for long tern, i am scared.
my mispellings and my grammar errors get wrose when i am having a bad lbd day. my brain say spell T H E but my hands may type H T E or E T H or whatever, the communicaton between brain and the rest of the body is altered so it is scary. so please if the modeators will allow my errors to be seen, eeryone can see how i am on different days, ad how many people with lbd are frequently accused of faking it, because it is so sporadic.
one mor thing, when our brain is yelling at us to say ugly tings another part of our rain knows we shouldnt but hte parttelling us to yell is so powerfu to us, that we obey it and say, do things taht we normally would NOT say or do to hurt those we love, but like my dad said (he called lbd the little man in his head because he couldnt rembmer lewy body dementia), when the little man says do it, i cant stop him he is bad little man. so if you know someone wiht lbd. and hey are saying terrible hurtful things, know that it is the ugly little manin our heads taht are forcing us to do/say these things and that the reason YOU are the victim of our ugliness is cause deep down, we know you love us and are supposed to love us no mattre waht. so we can let the little man be ugly and know you are there for us and love us. please remember that!!!
Submitted October 14, 2012
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.