PWD Robert Bowles LBD Unpredictable

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Lewy Body Disease – Unpredictable

Lewy Body Disease consists of two types of dementia.  When memory issues occur within the first year of motor symptoms, it is referred to as dementia with Lewy bodies (DLB).  Memory issues occurring more than one year from motor symptoms is referred to as Parkinson’s disease dementia (PDD).  I was diagnosed with DLB, June 26, 2012.

I am not sure what path PDD follows since my personal research and interest has mainly focused on DLB.  Having practiced pharmacy for 42 years has given me a keen interest in researching and learning more about this disease. Based upon my observations by being friends with people with DLB all across the world, I have found the path to be very unpredictable.  One never knows what FACE of DLB will show up at any given time, what cognitive skills will be will be a problem at any point in time or what motor symptoms will be a problem at any point in time.  Thus the roller coaster ride begins.

On Monday of this week, I visited the memory and cognitive clinic in Atlanta. First came the neuropsychological testing.  I am always given the MoCA test. While I have read that this test takes around 10 minutes to complete, my test always takes around 45 minutes.  I have read that the MoCA test includes testing of executive function which is not included in the MMSE.  Additionally the MoCA test has been found to identify cognitive problems in people with Parkinson’s Disease.  I am thankful my testing is only about 45 minutes.

Monday’s testing provided to me some confirmation of what I have been experiencing.  The first part of the test, I went through with rapid fire.  It was not that difficult.  Enter the executive function part of the test. WOW!!  It kicked my butt.  Quickly I got to a point that I would give the tester one answer and tell them that I could not give them anymore.  I explained to her that this was causing my brain to “sizzle”.  Thankfully the test ended quickly but the “sizzle” remained for several hours.

The results of the test were interesting.  They confirmed what I had anticipated.  My cognitive testing indicated that I had remained “steady”.  The NP told me that I was in the mild cognitive impairment (MCI) stage.  In 2012 at the time of diagnosis, I scored 23.  The average score for for MCI is 22.1.  The average score for normal is 27.4 and the average for Alzheimer’s is 16.2.  My second MoCA test was in April 2013 and I declined to 21.  I knew before taking the test that I had declined.

The MoCa test assesses cognitive abilities, orientation, short-term memory, executive function, language abilities and visuospatial ability.  April 2014 testing yielded a result of 23, back to the original test in 2012.  This test came after an extended time of talking with God in August 2013.  During that time I found my new purpose in life and was able to start doing better. The test confirmed that I was doing better than I was in 2013.  April 2015 testing reveled that while I was “steady” in my disease, I had decreased in executive function.  My overall score remained the same at 23.

I have always been able to multitask 4 to 8 things at one time.  No longer can I do this.  Emotional outburst have become common when someone attempts to tell me too much information at one time or if they give more information than is necessary for me to know the intent of the conversation.

I read an article this week that indicated women speak about 20,000 words a day and men speak about 7,000,  Typically we speak at the rate of 100-150 words per minute.  I cautiously showed this to my wife.  I suggested that this might be the reason why I have so many emotional outbursts when she is talking.  I ask her to imagine that she was talking to me for one minute and that during that one minute, I had to process 150 words.  Then, I would need to decide how to answer her appropriately.  All of this I had to do with a damaged brain.  While I have mild cognitive impairment, the decline in executive function causes these eruptions.

How do those of us who are experiencing executive function decline or dementia decline get past these situations?  Those of us in these situations are not able to change. We have no control over the path of our disease.  As anyone gets older without dementia, it becomes more difficult to change.  I would suggest that those without dementia consider having a better listening ear and decrease the number of words that are used in their communication with someone with dementia.

The comments about the number of words and listening were taken from an article written by Elaine C. Pereira, Alzheimer’s Reading Room

Be LBD Strong!

©2015 Robert Bowles

  .COMMENTS:

Essay Writing Services on 05/08/2015 8:49am
This is a very informative article. I did not know that there is a Lewy Body Disease. I was only familiar with the Parkinson’s Disease Dementia. Prayers can really do wonders.

Robert Bowles on 05/11/2015 9:23am
LBD stands for Lewy body disease. There are two types. Dementia with Lewy bodies and Parkinson’s Disease Dementia. If the memory issuees occur within the first year of motor symptoms, it is dementia with Lewy bodies. If the memory issues occur more than one year from memory issues, it is Parkinson’s disease dementia.

((Originally posted 2015 April 23 at lbdlivingbeyonddiagnosis))

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