Sunday, June 27, 2010


I know I have written about this before, but you must realize that this Blog is therapy for me also, and right now I need therapy, badly! I will also try to clean up my emotional, Fleet sailor, language, but I am really frustrated with people who say to me, "there's nothing wrong with you". "You're perfectly fine." Or, "I am a nurse and you show no symptoms of Parkinson's or Dementia." A nurse who lives in my complex actually told me that. Well, first of all, I take more meds in a day than Tweedy Bird eats bird seeds. My pill box is as big as a suitcase. Second, would they rather I was filling my drawers, peeing in my pants, and drooling down my shirt in public? I CAN accomodate them, very easily. Ask my wife. People see me when I am doing well, when the meds are working, when I am rested. They don't have to clean the solid waste out of the shower when I have an "accident" while taking a shower. They don't have to try to understand what I am saying when I am tired, frustrated, or my meds are at the end of their effective run. They don't see me aspirate when I choke eating oat meal, and I turn blue from not breathing.

It seems to me, if a well experienced Neurologist, a Clinical Psychologist with a PHD, the Office of Personnel Management, who approved my Civil Service disability, on the first submission, and the Social Security Administration, that approved my disability on the first submission, all without using a lawyer, all agree that I am ill, with a progressive disease that will lead to my early demise, who do these self proclaimed experts think they are. Additionally, the Neurologist that the Veterans Administration sent me to for evaluation agreed that I had Parkinson's and Dementia and advised me to retire and try to enjoy the few good years I had left. I did, thanks to OPM, Social Security, and our good financial management, take that advise, and I am retired.

The 14 year old neurologist I have written about at UVA is leading towards Lewy Body Dementia, which has a far more aggressive prognosis. Let's hope she is wrong.

So, I have decided to stop being nice to people who treat me like a liar and RIP their faces off, kick them in their private parts, or be so foul and abusive that they are reduced to tears of embarrassment. Sound too tough, too mean? That's how I feel when I get no respect, am called a liar, or am discounted as a fraud. And just remember one thing, I carry a cane and I know how to use it!

Today, a woman in my apartment complex stopped me and said; You didn't use that cane when you first moved here, why do you use it now." When I tried to explain the situation to her, she said; There's nothing wrong with you." Like Ralph Kramden said: "One of these days, One of these days, POW, right in the kisser!!" She is right, I don't use my cane all the time. I don't have accidents in my skivies all the time either.

Yes, I know people want to be nice and say; "Gee, you look good." and I really do appreciate that. You're being good friends, and understand some of my struggles. But this attitude of; "I don't think your sick" is going to get stopped by me, one way or the other. I have given up on getting sympathy from anyone, including family. I am still expected to perform at the standard that I did at 21. Well, I have a flash coming to that team also. I ain't gonna do it, no more. You have to realize that I am sick, I am not going to get better, I am going to get worse, and I do need your help, understanding, and support. Some folks need to get past the Anger and Denial stages of grieving and get on with business. I need that, and so do you.

Yes, I am angry, upset, and hurt. I do not take kindly to being called a liar, a goldbrick or a malingerer. Do you?! Probably not. And, maybe, tomorrow morning I will regret writing this and retract it. But, what's said is said. And it is good to blow off some steam, sometimes. And I don't have anyone I can vent to, but this Blog. If I offended any of you, I am sorry to hurt you. But take heed to what I have said. I am emotionally bruised and it hurts. And for my Navy friends, Yes I know where sympathy is in the dictionary.


  1. I understand how difficult it is for you. I am my mom's care giver and I see all the horrible effects of Lewy Bodies Dementia, like your wife. Family doesn't understand. They are just now starting to see that they need to get over themselves and help... You are a brave soldier and I appreciate that you write a blog. It helps me to understand my mom better.

  2. Grandpa Don, you rock!! Thank you for your honesty! I wish we were still there, as Tracy would stand by your side and help to make sure people "woke up and got a clue". We all love and miss you and Grandma Linda VERY much!! ~Amy