Monday, May 2, 2016

How am I doing? I am progressing.

That is always my answer to that question.  I am progressing.  Meaning, the Lewy Bodies are interfering with more and more brain functions, everyday.  And the things the Lewy Bodies messed with yesterday are finding new and more insidious ways to make my life difficult!  How?

Well, recently, I have been living most of my day with a "dazed, disconnected" feeling.  I see things, but they seem far away or super natural in some way.  That feeling is invading my life more and more.

Also, my constipation issues have increased.  Enough said about that.  Body temperature fluctuations have increased in occurrence and variance!  I can go from pouring sweat to ice cold in minutes!

My Blood Pressure extremes continue.  I can tell when my BP is spiking because my ears rig even louder than normal and I feel like my head is pressurized.  When my BP drops, I become unstable on my feet and dizzy.

I struggle even more to find the right words when I am speaking and I am sleeping more and more.  My short term memory is all but no existent and I a now loosing more and more of my long term memories.  For instance, I loose names of old Shipmates and Friends.  Additionally, I cannot seem to remember what day or date it is.   I am emotionally more unstable and the things that bother me, like noise, staccato sounds, questions without answers, politics, news, life in general, and inane chatter impact me more than ever.   I feel the rage and anger rise in myself and then, I go to bed.

These are all normal, LBD issues.  But they are not normal for me and I am getting tired of them.  Add that to the fact that these issues have not taken control of my life and you can see why I am upset, angry, and depressed.

What does the future hold?  More, ever increasing, symptoms,  The drugs are loosing their efficacy.   And my resilience is decreasing.  I have all but lost my ability to care about life as it happens around me.


  1. Today I read every one of your posts, and I thank you deeply for sharing your symptoms, your thoughts, and your fears. My husband was recently diagnosed with LBD, and now I understand more about what he is going through. I also now know what the docs meant when they said, "It can't be Lewy Body, because it has progressed so quickly." Your entire journey seems to have happened to him in less than two years. You have said that you are not brave, that you are scared to death, but I still think that it takes enormous courage to share your personal journey with so many others. Thank you again.

  2. I am so very sorry. I admire your courage, tenacity, and faith. You continue to be such a source of encouragement for so many, and the Lord is using you in a great way through your illness. Hold on, the best is yet to come.