What do these four things have in common? They can all be part of the enemy called Lewy body dementia (LBD). Fortunately for me, they rarely show up at the same time. Several days ago, they came with a vengeance. They took place most all of the night. This was the worst one I have ever experienced.
It's a good thing that I sleep in my recliner because of my supine hypertension risk.....if I din't, Judy would have been KO'd and I wouldn't be able to do all of the things I need to do today. Advocacy phone calls, email followup, vote, Dementia Action Alliance Advisory Council meeting, haircut, granddaughter's dance program and just before retiring for bed, a Forget Me Not Memory cafe. Full day filled with a lot of fun though. It keeps me going.
"Fight like a tiger, Be LBD STRONG"
© May 20, 2016 Robert Bowles
Snippet.....a bit, scrap or morsel. WOW!; if you are living with dementia (mine is dementia with Lewy bodies), what can you do with those snippets?
Train of thought can become difficult for anyone living with any type of dementia. With Lewy body dementia, this often occurs early in the disease process. Some physicians have told me that I am somewhat of an anomaly. My memory has stayed largely intact while all of the other symptoms have been present. I would have to agree. I was able to get into my fourth year before starting to experience train of thought issues. Next month, I will be entering my fifth year.
"What will I do with the snippets"? Guess what? There are two roads to take.....Yogi Berra say, "When you come to a fork in the road, take it". In this case, maybe there is a low road and a high road. I have never liked being on the low road....so I'll just take the high road. Certainly, there is nothing I can do about it.
Likely one of the main frustrations is that snippets are not related. In other words, the dots and dashes do not connect. Ends up happening.... you don't remember any of them. If someone asks me a question, I will be able to answer it. If they want me to do some math, I will be able to do it. That does not resolve the issue.
Once again, we are dealing with two roads.....the low road and the high road. Again I am going to try to take the high road because I don't like the low road. My choice is to always try to walk away from this frustration and seek relief from it. DISTRACTION.....self induced. That is a novel idea, but it works for me. Dump those unknown thoughts into the trashcan, and listen to music, walk outside, watch birds or use the computer....anything that will distract me and give me peace.
Be LBD Strong!
That's all for now!
© May 17, 2016 Robert Bowles
Some days up; some days down. You never know which direction you will go. There are many symptoms that someone living with LBD may experience. This has been a day that overall was not one my best days.
During the after noon hours, I was taking to someone, I'll call person # 1. We were having a good debate.... both of us were enjoying it. Enter person
# 2. They both start talking at the same time and continue to do this.
Years ago, I could listen to multiple conversations at the same time. No longer can I do this. When more than one person is talking at the same time, I simply know that I have to get out of the situation quickly. That is my only thought. If I do not get out of it, my brain will start pinging like a pinball machine is being played. When this occurs, I will put my hands over both ears and scream. It is if the neuron in the brain that needs to pick up the signal has died, and the pinging continues until live neurons can be found. This becomes physically, mentally and emotionally overpowering and draining. Once stopped, it does not usually take long for me to recover.
Today, I held up my hand and said, "I cannot handle two people talking at the same time". It got quiet. Person # 1 started back talking. Person # 2 started again to talk at the same time. My next response was "Ya'll don't get it"! Person # 2 leaves the room after making some comments and goes into their office. My thoughts were that I should explain to Person # 2 what happens in my brain so they could better understand what happens when this occurs. Person # 2 responds, "I know why it happens, you do not have to tell me"! I would suggest they really do not understand because they do not live with LBD; but, they had no interest in truly finding out.
There is no way for someone not living this disease to realistically understand the magnitude of the situation. People including care partners see the end results; but, likely never know the full mental and emotional impact that these situations cause. Rarely will the people living with dementia share the most difficult situations.
Hopefully through better education, there will be better awareness and understanding of what is happening.....that is why I unashamedly share the good, the bad and the ugly of living with LBD.
© Robert Bowles May 14, 2016
Early in 2010, I began feeling very tired and drowsy. I would even leave my pharmacy, go home and sleep for one to two hours and return to work. I visited my family practice physician who examined me and ordered some tests. None of this yielded any answers.
Beginning in mid-2010, I was beginning to struggle more with the same feelings. My wife had systemic lupus and rheumatoid arthritis. I began asking myself questions.....What if I should die?......What would my wife do with the pharmacy? I knew that she would have no idea what to do with a thriving business. Feeling that this would be unfair to her, I told her I felt we should sell the pharmacy....not what I wanted to do. I was only 63 years old, and had planned to keep the pharmacy at least until I was 70.
The process began and within four months, I had negotiated the sell of my pharmacy to a national chain. Little did I know that my agreeing to work for them during the next year would become very challenging.
Two months after selling my pharmacy, I became very depressed. I no longer had my patients to love and care for. My life was empty. On my first visit with a counselor, she suggested that I get my physician to me an antidepressant.
Four months later and not responding well, she suggested that I visit with a psychiatrist adding the newmedication, I went almost catatonic. Walking into the physician's office, the receptionist said; "Don't stop, go on back". The nurse met immediately and put me in a room. Within two minutes, two physicians were in the room with me.
They started the process of tapering me off the medication. Two months later, I started passing out and hitting the floor when I stood up. This lead to several injuries. After referral to an electrical cardiologist, I was diagnosed with orthostatic hypotension. Ultimately, I reached the point of taking 7 pills a day to raise my blood pressures and 2 a day to lower it.
Not responding well, I was referred to a general neurologist. On my fist first visit, I was diagnosed with Parkinson's disease and mild cognitive impairment (MCI). I started on medication for Parkinson's. The next month I visited the neurologist again. His diagnosis had changed.....MCI and likely Frontal Temporal dementia. Fortunately, he referred me to an Emory Integrated Memory Care Clinic in Atlanta.
Originally, I was told that I would not receive a diagnosis until my second visit. That changed.....at the conclusion of a 3 to 4 hour visit, I was told I had dementia with Lewy bodies. Just before or just after diagnosis in June 2012, the hallucinations and dream enactment started. Prior to going to Emory, I was experiencing all of the 20+ diagnostic symptoms listed on the LBDA website with the exception of two. It was the 8th physician in 18 months that diagnosed me on my first visit with him.
My initial acceptance of the diagnosis was, "it is what it is and everything will be OK". Three months later, I felt as if I was a convicted murderer. The physician had entered the charges, the jury had found me guilty and the judge had issued the death sentence without appeal.
Eleven months later, I found my purpose in life after my diagnosis. Actually, it was what it had always been during my professional career. I just had a different venue. With Mom having Alzheimer's, my Dad having vascular dementia and now me with DLB, I could help those living with dementia better understand and encourage others that there is life beyond diagnosis.
Amidst the roller coaster ride of LBD, finding acceptance and purpose have enabled me to have a reasonable quality of life. Advocating, engaging with others and computer brain games continue to challenge my brain.
Two weeks after diagnosis, I told my wife that the life expectancy with LBD was not good....the average was 2 to 20 years. I told her that day that I intended on beating 20. We will see where it goes, but I will go down fighting.
My desire is to continue forging ahead, helping others and enjoying life beyond diagnosis.
© Robert Bowles - May 7, 2016
Robert Bowles, Jr.