Will and Grace

It takes my breath away. Sometimes you get a glimpse of the elaborate machinations that go into assembling the many seemingly arbitrary moments of life into a meaningful purpose and you are awestruck by the miracle of it all.

At first when we took papa to a neurologist, the doctor sort of mumbled to us that he had early stages of Parkinson’s disease, hydrocephalus (water brain), and dementia. If it was not for God’s grace, I would have completely missed the significance of this. Somehow the word dementia caught my imagination and I started reading about it profusely. There were so many types of dementia and papa did not seem to fit the bill with any of them. Then God goes ahead and takes my breath away by bringing LBD to my attention. I could not believe how much all his symptoms matched and thus began a jihad to clinch the diagnosis.

It is not easy being totally unqualified and trying to tell a medical professional or anyone who thinks they have half a brain that you suspect your father has a major neurological disease called LBD which is seldom diagnosed because of its complexity and uncertainty. I felt like Galileo trying to bring the truth to an obstinate world and almost got ostracized. Thankfully mom and Zak immediately saw the merit in this and backed me fully.

I would take papa to different neurologists and freeze midway whenever they asked for his history. It was so complicated that I knew I was not able to articulate everything and God knows I am not the most lucid conversationalist. There was also the problem of letting the doctor know all the facts without hurting papa. I was getting desperate but I knew it would be unethical to force a diagnosis. I had to make them see what I was looking at and let them come to the same conclusion on their own. Meanwhile time was running out and it was imperative to get the right diagnosis for the wrong drug administered to an LBD patient can kill him (which is often the case) and this thought was haunting me.

I am humbled by the guidance that God gave me then, how He steered me through numerous obstacles, and made it permeate through my thick skull that I had to just write it all down. The solution was so simple that it was brilliant. Already the years that I slaved at medical transcription had armed me with all the right terms and format. I had already collected all the information that I had about papa. All I had to do was put it all together into one medical file with all the history, symptoms, records, test results, etc. something that would automatically have been done in a developed country but here it was unheard of.

Even the most mundane act is seldom that. One fine morning when I set about to write this document I felt like I was finally serving God’s will, fulfilling my destiny. Zak joked that I looked like Karate Kid preparing for the final battle! And what a war it has been!

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/