September 23, 2014
It has been a little over a month now since we got the diagnosis for my husband.  I don't even remember if I already posted about it or not and can't be bothered to look.
The diagnosis was LEWY BODY disease.  I have spent many hours on the internet researching this insidious disease.  It seems the out look is not good no matter what you do.  It is so distressing to  watch what this disease is doing to him and to our life together.  Lewy body has symptoms of both Parkinsons and Alzheimers plus it has it's own distinct symptoms.
My mother had Parkinsons (or that is what we were told, more on that later) so the shaking that my husband displayed troubled me, his increasing memory loss was another sign that things were just not right.  The VA did testing over a year ago and did determine that he had Vascular Dementia, it was not until after more intense Nuerology testing that they determined it was Lewy Body.  Lewy Body is the second most diagnosed form of dementia but is very hard to diagnose.  this is where my thought on my Mom come into play, I wonder now if maybe she had Lewy Body and not Parkinsons.  From what I have read on the internet the drugs such as Myrapex and others that my Mom took for Parkinsons can cause the anxiety attacks, night screaming and other conditions that my Mom had.  It says that people with Lewy body should not take these Nueron drugs that normally help Parkinson patients.
I am so very glad that the VA has given Terry what appears to be the proper diagnosis instead of rushing to conclusions due to his symptoms.
The weakness and apathy of the disease are the hardest part for me to take at this point.  He is having problems remembering things but that has been going on for years.  I guess that the apathy has also but I am more and more painfully aware of it.  He has been sitting on the couch for over six years with apparently nothing to do.  It is good to know that he does have a medical condition and not just plan indifference.
His ability to understand how to do things, ie: get something from the car, is becoming increasingly difficult.  At the football game on Sunday this week it was raining and the wind was blowing and it was cold, we huddled under umbrellas and blankets.  He was just so miserable and did not seem to grasp what to do so I suggested he go to the car, he was literally shaking from the cold.  I continued to sit in the stands until the end of the game.  When I got to the car he was still shaking from the cold but had not thought to turn the car on to get heat.
It is said that Dementia is the "Long Goodbye".......indeed it is.  We celebrated our 43rd wedding anniversary this month and as I looked at a picture from before we were married I could not help but think "where did THAT man go?"