Dementia with Lewy bodies (DLB) is often referred to as a "roller coaster" ride". The highs, the lows and the in between of the ride can create many challenges along the way. I understand this first hand. My diagnosis of DLB was on June 27, 2012. That first year was very low. Soon after the first year people would come to me and tell me of their anticipation they would have been going to my funereal. Sleeping 16 to 20 hours a day and practically doing nothing created a very empty and useless feeling.
Mid 2013, the roller coaster ride started uphill. The next year and one-half was as if nothing was wrong. Many people would tell me, I no longer appeared to have dementia. My MOCA neuro-psychological test had improved by 2 points. Even some physicians questioned if I had it. My neurologist in Atlanta stood firm in his diagnosis that everything led to DLB. He would not change his opinion even though I challenged him. Deep down though, I knew that things were not the same. In August 2013, I unconditionally accepted my diagnosis of DLB with all the possible strings attached.
Late 2014, the roller coaster ride started downhill. I continued to have random hallucinations and dreaming acting along with periods of decrease alertness, attention and focus. Over the next 2 years, my MOCA score on the neuro-psychiatric tests had remained constant indicating that I was in the MCI range. The autonomic dysfunction of the GI system began in late 2014. Likely presenting one of the most difficult times with this disease outside of the first year. Continued ups and downs in this area continue; however, there is a lot of gratitude on my part that things are settling down some.
Two weeks from now, I will see my neurologist again....a day that I will take another neuro-psychological test. They are never fun. They are mentally, emotionally and physically exhausting. The frustration was so great during my test in 2013 that I threw a pencil away from me. Thankfully, they stopped the test and got me some water so I could settle down. It goes through my mind, "how will I do on the test this year?" I think I already know the answer....not the answer that I would like to give. For you see, I can tell changes in my memory.
These changes are very real to me. They produce anxiety, frustrations, anger and even sometimes behavior that is not typical for me.....sometimes causing me to be mad at myself. I am fortunate that my wife knows this is the disease and NOT me.
The changes that I a have noticed have been in several areas.....sometimes slowness in responding to someone talking with me, sometimes having difficulty thinking of the word I would like to use. I know the meaning of the word, but I cannot think of the word. Other changes.....having my mind on something and either myself or someone else changing the subject...when this happens, I have no idea what I was previously thinking. Sometimes it is a day or two before I think of someone's name or something else I was trying to remember. One thing that often goes early in DLB is problem solving. Math, Pharmacy and problem solving are things that can disappear early in DLB. I am thankful those have remained largely intact to this point. I continue to challenge these with reading and playing brain games.
Where do I go from here.....I have a choice....keep on trucking and move down the journey.....enjoying each day. At the present time, I feel I can make good choices. My desire is and will be to fight this disease and defy statistics are a large part of my being. I will not lay down and give up. There is too much advocacy to do.
Continuing with a positive attitude will remain a primary focus of mine. Whether it be socializing with people at home or by virtual memory cafes, I will stay social. Late 2013, I realized my purpose in life after diagnosis was the same thing I did in my pharmacy.....caring for others and being available to help them. That same purpose, now through advocacy, enables me to continue my purpose in life. These 3 things will enhance quality of life, and I will continue on my journey through whatever it might hold. My bad days will only be a glitch for someone who still has a useful life.
Better days are ahead and I look forward to enjoying them with my family.
Be LBD Strong!
©April 10, 2016 Robert Bowles
Robert Bowles, Jr.