Thursday, March 7, 2013

Fluctuations in autonomic processes

I have found the answer to my sweating, body temperature rises, and other bodily function issues.  It is a primary symptom of the progress of LBD.  My neurologist has not mentioned it.  I guess he is waiting for me to tell hime so he can say; "I was expecting that."

It took me some research to find this info, but I have found it on three respected web sites.  These problems worried me.  For instance, I get exhausted and perspire profusely when I exert the least amount of effort.  I also get very winded.  I was playing Ping Pong yesterday with a new friend who has Parkinson's.  I was real sweating and breathing hard.  He asked me if I had a heart condition?  I told him no, but this further supports my theory.

I also found out that Lewy Body Dementia was only discovered in 1996!  Now, it existed before 1996, but it was diagnosed as Parkinson's with Dementia (PDD).  In 1996, the Lewy Bodies in the brain that cause this disease were discovered.  So, it was called Lewy Body Dementia.   The medical profession is struggling to learn about this disease.  When I moved to Florida, I went to a GP physician who was recommended to me.  He told me that he had not heard of LBD and would have to do some research on it.  He has, and I am happy with him.

Those of us with this disease suffer from the ignorance of others.  We get told we are not sick, we are fakers, malingerers, or gold bricks.  I am a man of honor and I don't lie.  I am sick, and I am suffering, and I am tired of having to prove it to everyone.  I am sure my fellow LBD sufferers are too.  I read a post on the Lewy Body Dementia Association Web Site where a nursing home nurse told a LBD sufferer that she DID NOT have LBD and was faking because she had lived too long!  If the statistics only started to be accumulated in 1996, just how good are the statistics?!  But, we with this "New" disease are always called into question as liars.

As far as my disease is concerned, I am moving down that highway that I have to travel.  I am farther along that I was a week ago, but I have miles to go before I sleep.  As measured by my neurologist, my memory is much worse.  My brain has slowed by 50%, his calculation not mine.  The pain I experience in my major muscles like legs, arms, and shoulders, is increasing.  I choke when I eat, sweat uncontrollably, have difficult getting out of a chair, have problems reading and speaking, get disoriented, angry, constipated, and tired.  The most frustrating part of this "New" disease is that no one can tell me what is happening to me.

So, I have discovered what autonomic processes are and mine are broke!  Good discovery!  Hope it helps someone else know and understand what is happening to them.

1 comment:

  1. You are so right....sometimes the strangest things can cause stress. We went to the theater last night and I thought my LB hubby was going to jump out of his skin and run skinless through the theater....stress at so many people, stress at the noises of the performance I thought he would love....difficulty regulating how hot he felt. On and on I could go. Thank you for writing.