rivah

i've had a flood of thoughts and emotions since first hearing the words "lewy body disease". i've learned a lot.  the reality of the illness makes me want to run.  but by nature and training i am a pragmatist. i know there is no running from this,  so i continue to try and navigate the reality.

the diagnosis shines the light on  life's frailty and unpredictable nature. i've always been one who was good at living in the moment with an eye on my direction.  i'm not putting off vacations and dreams for retirement...

finding out that alan has lewy body unsettled me, unmoored me for a moment. his parents lived to their 90's , pretty much sharp as tacks. i assumed that he would do the same. understanding the diagnosis, i realize that the 20 year path i thought i was on has changed. its a different path of undetermined length, but certainly shorter. the difficult relationship that i have with his wife is magnified but its shape and prickles are the same, just bigger.

in a strange way i am peaceful about it. i'm glad i know, and that the changes in him have a name. i understand and can prepare that some days will be better than others, know that improvement is unlikely but that homeostasis is possible.

its hard to face the changes. the last few times i have seen him, he isn't the alan i remember. he looks old. he is no longer dapper alan. he's usually wearing sweats and there is no sign of a recent shower or the cologne that i remember. his face shows a hint of the parkinsons mask, more obvious in photos but visible to the eye as well.

yesterday at lunch he told me that his family practice doctor says he thinks the diagnosis of lewy body is not correct.  it was hard to see the glimmer of hope in his eyes, knowing the fp is full of shit. feeding into the denial of his wife and of his own denial.

to understand my response to this its important to know that i am not a fan of the family practice doc. i've worked with many over the years and to a person they  know a little about a lot, and generally do not want to admit when they are out of their league.  i tried to explain that the neurologist is the expert on neurological issues and that only she could change a diagnosis.

since i  did my own research on lewy body, saw his chart with the diagnosis,  talked with the neurologist and her team caring for him at good sam,   i know the diagnosis is correct. everything falls into place with lewy body at the head.  does it matter what they call it? i think so.  having a correct diagnosis is key to having a plan in place that will maximize quality of life.

but in truth, if he and his wife choose to float down the river of denial, it doesn't matter. since there is no real treatment, not believing the diagnosis is not going to change  the reality of the situation.  it's not going to change my reaction to the situation and abiliy to speak the truth  as i see it.