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.

Tuesday, June 22, 2010

REM Sleep Disorder

I have added to the articles you can get to from this blog a very interesting article on Rapid Eye Movement (REM) sleep disorders. Research has discovered that the part of the brain that is effected by Parkinson's and Lewy Body Dementia is the same area that stops us from acting out our dreams. Since I have this disorder, I found this research very interesting. The diagnosis and pin pointing of exactly what I have has been painfully slow and inexact. Research like this, helps the professionals peel back another layer of the mystery. Why do I and other sufferers of this maze of diseases care what the actual problem is. That is an easy answer. The treatment for Alzheimer's, Dementia's, all of them, and Lewy Body Dementia is a shotgun approach, just like cancer treatment was 20 or 30 years ago. Now, I will admit, there is more available drugs to treat these diseases today than when my Father-in-Law had Alzheimer's 20 years ago. But, if they can pin point the disease, then research can find the exact cause. That will lead to treatment that is more precise and hopefully more helpful. So, I will continue to ask questions, do research, and try to learn from those of you who are suffering from these diseases and from your wonderful caretakers. Never give up, maybe the research will not help me or you, but think about the ones who come after us. That's who we should work for now.

Saturday, June 19, 2010

Today has been an interesting day.

You may remember that a while ago, I had a problem acting out my violent dreams. This led to two instances where I physically accosted my wife. She was not seriously injured, but I brought it up to my Neurologist. Her reply was, "I was expecting this." She explained that it was because of the effect my dementia was having on my brain. She further explained that the "normal" brain paralyzes the muscles during REM sleep. REM sleep is when dreaming occurs. In her words, that part of my brain was not broke. She then prescribed a medicine called Clonazepam. I don't know what it does, but I don't hit my wife anymore and that's good! She really did not like sleeping in a catchers mask, even though I did get he a very comfortable one, It was the "Johnny Bench" model. I call these pills my "don't hit Linda" pills. And as I said, they seem to work. My last visit to my neurologist, my wife discussed the continuing vivid, violent dreams that I continue to have. What can I say, I led a violent life and I am reliving it in my dreams. In any case, these dreams wake me up, three or four times a night. It seems like, when the movie is over, (that is, the dream) I wake up. Then I go back to sleep and have another feature length dream. The neurologist suggested that I double the dose of the Clonazepam, to see if that reduced the dreaming. I started the new dosage last Thursday. I can honestly tell you I sleep all night through. I still dream, I just don't wake up. Nothing wakes me up. Thursday night my wife came to bed well after me, got another blanket out of the closet, put it on the bed, switched it's position because she had it on wrong, and all through this event, I never stirred. OK, this seems like a good deal. At least I am sleeping through the night.

Today, all I wanted to do was sleep. I woke up at 0800, drank some coffee, had some toast, took my morning meds, and went back to bed by 0930. I stayed in bed until 2:30PM. I finally got up and ate lunch, walked the dog, got the mail, but that was the extent of my energy. We were supposed to go to a Church gathering this evening, but I could not deal with the thought of a large number of people. So, we stayed home.

Now, I am not saying it is related to the increase of my "Don't Hit Linda" drug, but it bears watching. In the past, recently, I have had increasing problems with crowds, noise, and commotion. So, this may just be that problem increasing. But, this has been a very introspective and introverted day. We will see what tomorrow brings.

Sunday, June 13, 2010

Surprise, Surprise!

Well, let me update you from my last post. You will recall that I was anything but pleased with the treatment I received at UVA. I sent a rather informative, polite, but pointed email to the Clinical Neuropsychologist (PHD) man child explaining that I did not appreciate them not doing their homework before I drove 3 hours and stayed overnight at the reduced rate of $110/night, plus tax. Not to mention the fact that he wanted me to get the results of past testing from my doctor. Aren't we all connected by the Internet these days?! I also dropped a copy of that email off at my Neurologist's office. Well, Friday I received a telephone call from the PHD and he was surprised at my rantings. I guess I should have blown up in his face. Trust me, next time I will. But I was nice and he apologized and said he would now do his homework and wanted a chance to make this right. I agreed, so we will meet again an a couple of weeks. Then, Saturday morning, at 0930, the 14 year old called me! She was less apologetic and acted like someone made her call, probably her mother. But, just the same, she admitted they messed up. The surprise to me was, she did not even know she had a Wednesday appointment with me. If I was not retired, I would go out there and square their office away! So, sometime in July, I will make the trek to UVA one more time. If they don't do me right this time, I am going to the hospital administrator. I hope he is over 21.

Wednesday, June 9, 2010

We're Back!!

What a whirlwind trip! Our trip to Iowa was nothing short of fantastic. We were treated like long lost family, which we were, from the moment we rang the door bell at our hosts home. What a warm reception. Remember this couple, the husband is 94 and the wife is 89! They still drive, keep house, cook, go to church, and host family reunions with 30 people in attendance. Oh, did I mention she makes homemade ice cream and candy?! Every meal was a home made taste delight. The house was hospital clean, and the fellowship as warm, rewarding, and very special. We met more wonderful people than I can remember. Linda spent a long time working on family tree discoveries with two of her cousins. I saw them sharing information, pictures, and notes about family births, deaths, and birth places. One of the cousin's husband also had Parkinson's. He and I bonded almost immediately. He also loves automobiles and is fun to be with. He started a rumor that he and I got Parkinson's from our wives, who are of the same family tree! Makes sense to me. Our host also had a regulation pool table in his basement. Sunday night, he gave me lessons! He can play pool, not for a man of 94, almost 95, but he can play pool that would make a pool shark cry! Wow! It was good that we left for home on Monday, because it was apparent that we were wearing them out just a little. But we will be back, and soon.

Upon our return, I had an appointment with my neurologist here in Virginia Beach. It was a good visit and I came away feeling cared for and content with my progress. I really do like and respect my neurologist. I believe her aggressive treatment of my condition has bought me some time, slowed my memory decline, and helped me get ready for the future. That was Tuesday. After that visit, we made the trek to UVA to see the 14 year old Neurologist that thinks she is a research doctor. She had cognitive skills testing scheduled for me to start at 0830 on Wednesday. We got to Charlottsville at 10PM and finally got to sleep around midnight. We were right on time fr the testing and there were no real surprises. I have been through this series of tests twice before. I will say, that this series of tests lacked some of the tests that my local neurologist uses. Just the same, it was OK. The I me with the Psychologist with the PHD. That is also normal, I see one here. He asked all the usual questions and had the usual answers. What made me angry was that he had not reviewed my record and did not have my previous test results from my home neurologist. I was supposed to see the 14 year old at 2 PM. The PHD decided that would be a waste of time, since he would not have time to decode the tests I had taken today and also, he did not have the other tests to compare them too! Does anyone do their homework anymore. To top that off, he had the audacity to ask ME to call my neurologist and have her fax the files to him. THAT WILL BE THE DAY!! He and the 14 year old get paid big money to do their job, and that includes preparing for my visit. I did not make these appointments, they did. I did not co-locate the appointments, they did. This will be the last time I spend $110 for a hotel room and $40 worth of gas to be exposed to two kids playing doctor at my expense! It took me the three hour drive back to Virginia Beach and two hours at home to calm down enough to write this. Tomorrow I am going to stop in and see my neurologist and tell her what I think of this so called research neurologist. And that opinion is not good. I have little patience for people who are supposed to be professionals, that do not do their homework! I also intend to write a letter to the UVA Medical Center and flame spray their organization, or lack of. It was apparent that no one was in charge.

So, good family reunion, one more bad medical event. If I was a professional baseball player, batting .500 would be pretty good.

One other funny note. I drove when we went out and the 94 year old rode in the front. I would have to remind him to put his seat belt on. He would always comment; " If you don't have confidence in your driving, I'm not going to argue." I thought that about said it all!

Thursday, June 3, 2010

Traveling, for the first time

This is the first time Linda and I have traveled since my problems have progressed. We are going to fly to Iowa, to meet some "Live" relatives that she has never met before. This should be real interesting. The person we are staying with knew Linda's father when he came over from Germany in 1927. She was 7 years old. That makes her, let's see, OLD! And the lady and her husband still live on their farm! I hope there's more than one bathroom.

Travel has always been a bit uncomfortable but now, taking me out of my routine, my comfort zone, is problematic. I won't even have Marcel the wonder dog with me to keep me calm. But, this is a good test. It is a short trip, frantic, what I used to call a "Surgical Strike". We will see how I do and how she handles my problems with environment, time, and confusion. I won't even know where the coffee pot is!!

We went to a presentation on Dementia last Tuesday that was very informative and provided some answers. The two health professionals talked about many of the issues that I am experiencing. I thought, in my own way, I am normal!! That is, I am experiencing the same things others with dementia and Alzheimer's do. For instance, at night, noise really causes me to become agitated. Watching TV, when they increase the volume for the commercials, and it keeps getting louder, each commercial at a time. I really get angry, almost uncontrollably so. Well, that is normal, for my condition. There, the world is messed up, not me! We also got connected to a support group that meets once a month. We will miss the June meeting but we will be sure to make the July meeting, I hope.

So, we are off, on our trip, not our rockers, I hope. I will let you know how it went when we return. Oh, by the way, after we return, I have an appointment the next day with my neurologist, then we drive to UVA for a 4 hour cognitive skills test and an appointment with the 14 year old neurologist on the next day. Wow, what a whirlwind.