An unwanted visitor called LBD

April has been a month of drowning and survival, literally and metaphorically. However while I survived the drowning and finally mastered the art of swimming at a coaching class, my papa continues to drown at a pitiful pace and there is no relief in sight. Once LBD catches hold of your loved one, it is one sinking after the other until they finally slump to the bottom. I try to collect as much information as I can about this little known dreadful neurological disease. At the same time, I struggle to remember and understand who my father is before the living entity that looks like my father now becomes more and more distant and frightening.

I like to paint in my mind the kindness, patience, and love he has bestowed on me over the years. I want to reconstruct those moments in my childhood which my mom often talks about when he used to walk all night carrying me whenever I was ill. I want to remember him as the soft-spoken, peaceful, and optimistic person that I knew him to be. I want to know about the person that mom was in love with who was handsome, vulnerable, meticulous, a brilliant doctor. It is hard to piece this together now for we do not really know when LBD truly began. I am always grateful when we have visitors who genuinely come to visit papa, for then it gifts us with those wonderful glimpses of a lucid papa who does not always exist for us in continuity. Also until now, he has always been better when we are outside, so we try to go out as much as we can for as mom says she wants to step out of this nightmare at least for a little while into a better dream.

This is the month when he lost his ability to dress himself for the most part. Now mom brushes his teeth and chooses his clothes. She takes such good care of him that to me she is an angel who suffers much in stoic silence. Mom does not remember anymore what a full night’s sleep means. So many other things that we take for granted in our daily life, she has foregone gracefully for him with barely a whimper.

In November of 2009, after pouring over the Internet for innumerable hours trying frantically to understand the causes for the changes in papa, I began to be convinced that he was suffering from LBD-the monster that brews when you throw in Alzheimer’s and Parkinson’s disease together. Then was the heart-wrenching agony of convincing others and finding a suitable neurologist who would truly understand. After several roadblocks that were thrown our way that almost shattered us, we have finally reached that stage by God’s grace.

One solace is that there are wonderful people out there who are willing to share their LBD stories, who make this journey easier by showing the path ahead. Thank you. God bless them all and may their journeys be smoother with ever His saving grace.

http://www.lewybodyjournal.org/journal/