Wednesday, May 4, 2016


With all my posts, through the progression of my disease, I have been very open about the effects, physical and emotional, of this disease.  But, I have been a little "brighter" about the effects of the disease on me.  I have tried to portray myself as tough, tenacious, and unaffected by Lewy Body Dementia.  Nothing could be farther from the truth!

And those posts I wrote that did show the effects were understated.

The truth is, I am overwhelmed by LBD.  I am unable to cope with the effects of the disease and I spend everyday depressed, agitated, and despondent.  Everything, every manner I used to deal with difficult times have failed me.  I cannot think my way out of the "funk" that invades my mind and my life.  The dreams I used to cling to are now empty and unobtainable.  The things I loved to do, I can't do anymore.

I am tired of telling people I am doing "well" or "As well as I can" when I am screaming inside that I am lost, dying, depressed, frustrated, and without hope.

The truth is, once LBD takes over you loose total control of your life, be that the first year your are diagnosed or four years into the process. Then there is the doubting Thomas that tell you you don't have a disease, are faking it, have had a bad diagnosis, or a mistaken, about being ill.

However, I am floundering in the prison that LBD has locked me in.  A prison that has no release and only progresses the prisoner deeper into isolation and darkness.  The people who used to be your friends stay away.  And if you moved to a new city like I did, you are even more isolated.

I remember when we still live in Virginia Beach, someone knocked on our door.  It was Chuck Morton, a shipmate I had not seen in 20 years!  I was so excited to see him I forgot I was still in my PJ's and had not even combed my hair!  We talked for two hours.  That was wonderful.

But now, I am lost in my thoughts, divorced from my dreams, and looking into an abyss.  How the hell did I get here?!


  1. You have a God-given ability to write cleary and beautifully that has remained intact through your illness. The Lord is still using you. Take heart and be of good cheer--He has overcome the world!

  2. Dear Silverfox, When you have a bad day and vent, what do you prefer to hear from your friends and family about your feelings and frustrations?

  3. I don't know if you present yourself in person as articulately as you write, but it must make it even harder for people to understand how hard it is, how much energy it takes for you to get through the day. A nurse who visited my husband told me, "I have never seen someone speak so coherently while being so out of touch with reality." I am glad that he can still appear "mostly normal", but I know that he is deeply troubled, confused, and overwhelmed. Thank you again for sharing your struggle. It helps many of us. I hope that it helps you as well.

  4. My mother is suffering the torments of Lewy Body Dementia, and I understand a little of what you are saying but from a different perspective. I never know how to answer when people ask how she is doing. I, too, want to be honest and tell them that she's dying a very slow, torturous, scary death. But no one wants to hear that. I am so sorry for what you and your family are going through with this disease. I am hopeful that you will not have to suffer too long.