Today, I am going to digress from my original plans for this series of blogs. Tomorrow, I will start back with my original plans.
I realize that I am an anomaly. Six months after diagnosis, I would see friends in town. I had lost a lot of weight and had been sleeping 18 to 20 hours a day. They would come up to me and complement the way I looked. They would tell me they thought they would have already gone to my funeral. Jokingly, I would tell them I understood and that I had called the funeral home every day to make sure that I was not there.
Yesterday, I wrote about my 18 month path to diagnosis. While that period of time was very difficult, I began doing better about 6 months after diagnosis. I had read everything that I could find about LBD and the path of the disease. My thoughts were that I was not a statistic. I am a human being. The statistics meant nothing to me, and I told my wife that I would defy them. I began to embrace, "there is life beyond diagnosis". I decided to rely on my faith and live life to the fullest. Tragically, I have lost too many friends that were diagnosed after me. I struggle with that. It breaks my heart every time that I hear of anther friend that has died.
It has been almost 4 years since my diagnosis. During this time, I have remained in the mild cognitive impairment stage. Over the past two years, the hallucinations, dream enactment, nightmares, Parkinson's symptoms, blood pressure and heart rate issues from autonomic dysfunction and other symptoms have not been as problematic. Over the past 2 years, these symptoms have randomly appeared and be just as difficult to deal with as they were initially. This is why I tell people than I am an anomaly. My original diagnosis in June 2012 in Atlanta was dementia with Lewy bodies with mild cognitive impairment. This has been confirmed by Mayo Clinic in Minnesota.
I feel that my "anomaly" gives me a window of opportunity to share my journey and hopefully help others. During my journey, I have followed the path of an acronym ASAP. I have changed the meaning of ASAP and applied this to my life. A = accept the diagnosis, S = stay social....try to increase socialization, A = have a positive attitude and P = find my new purpose after diagnosis. Let's start LIVING!!!
Be LBD Strong!!
© 2016 Robert Bowles
Robert Bowles, Jr.