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
Sometimes doom and gloom are preached about dementia. Often I hear people say there is no hope after their diagnosis of dementia. That is likely a fairly normal response. Our world has been turned upside down. Do we stay in that mindset or do we seek to LIVE LIFE TO THE FULLEST. My decision was to follow a process of learning and finding purpose after my diagnosis of Lewy body disease (DLB).
My thoughts turned toward the fact that everyone will die one day. Did I want to die at age 64? No! Since I had no desire to give up, learning to LIVE WITH DEMENTIA became a mission for me.
Having practiced pharmacy for 42 years and continually striving to study, learn and meet the needs of my patients, I decided to use that same passion and focus in learning more and more about dementia. Learning has had a huge positive impact on my journey.
Giving up is NOT an option. I will fully acknowledge there are parts of living with dementia that are physical, emotional and cruel. I refuse to let those elements and others in this disease define who I am. Where do I go from here?
Reflecting back on the United States Declaration of Independence, we find, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."
This tells me that I have a right to live with dementia. America Heritage Dictionary Fifth Addition defines "liberty" as "the condition of being free from oppressive and restriction by government or OTHER POWER. Thus it becomes important to NOT allow dementia to have power over me. There is no room in my brain for this to occur. I refuse to rent space in my brain for that potential power.
A very important one.....HAPPINESS for those of us living with dementia. Happiness and calmness sets the stage for having a positive attitude and finding purpose in life.
Enjoying peace and calm can help bring happiness. Pausing to view God's creation, and the things that we've never seen before because we were too busy doing other things. Watching the birds and listening to the birds chirp, bringing joy. Showing others we love them by finding time for them. So many things we can do to enjoy a better life.
Now is the time.....START LIVING. Focus on our blessings and enjoy the day.
© April 2, 2016 Robert Bowles
Robert Bowles, Jr.