Sunday, September 16, 2018

As the Lewy Turns!

I spent 20 years in Uniform in the Navy, as a Gunner’s Mate trtireing as an E-9.  Then, I went to work for the Navy as a Civil Servant (GS) working for the Navy on weapons systems and also in management.  I did some very dangerous things, some really crazy things, and put my life on the line more than once.  Never ONCE was I frightened or afraid.  I trusted my training and my ability.  I knew the systems I worked on and I was trained by some of the BEST Gunner’s Mates the Navy every had.  Lewy Body Dementia has changed ALL of that!!

I used to work with a Pastor who often said;  “I am scared not and I am not afraid of anything!”  Well, that is where I am now.  My experience with LBD has taken a BIG turn for the worse and it has me finally understanding the fight I am in for.  The forest few rounds, maybe the first half of the fight, I though I was doing good, maybe even winning a little,  The last few his I have taken have convinced me I am NOT getting out of this fight alive or even easy!

My Wife and I just discussed this over the phone and she believes, and I agree, that the recent increase in LBD issues has brought me back to the grief and denial phase.  I have written about me denying, in my mind, that I am as bad off as I know I am.  I often look at new trucks to buy online, new homes to buy, and other things I used to be able to do.  That clearly is part of denial.   But I now realize I am grieving over the fact that I will never be we’ll again and all I have to look forward too is more and worse LBD issues.  I am overwhelmed with grief, anger, and emotions that I cannot control.

I remember taking my Nephew Alex on the Aircraft Carrier USS Lincoln.  As we walked out on the Flight Deck, that 10 year old boy’s eyes looked like saucers!  He said; “I never thought it would be THIS big!”

Well, I never knew LBD could be this frightening, difficult, and overwhelming..  I am truthfully defeated.


  1. Hebrews 12:1. “Therefore since we are surrounded by such a great cloud of witnesses...let us run with perseverance the race marked out for us.”
    As long as we are breathing, we are not defeated. And as long as you are writing and encouraging other LBD patients, you are victorious! Keep on—the race isn’t over yet, and your crown awaits!

  2. Ditto my friend. I cannot even dream or hope, or beg, borrow or steal a moment in which I anticipate anything other than the worst. The autonomic dysfunction is just plain killing me, the Parkinson's keeps me in significant pain almost all of the time, even at night in bed. And let's not forget hallucinations, significant behavioral issues, and a almost total absence of short term memory. I don't give up because I just don't seem to know how, but I know through and through that I am way closer to the end than the mid-point. More and more, I think the autonomic dysfunction is what will facilitate my departure. Well, what will be will be as they say. It makes me sad, deep down sad. I used to be mad, but I don't see the sense in mad anymore. My wife can see it, I can see it in her eyes. When she doesn't think anyone is looking, I can see her pain and realize that the sooner the better for both of us. Cheers.