Friday, October 1, 2010

Life, a progression..

I have dedicated both of my Blogs to expressing what is in my heart, what has happened in my life that was important to me, and my expressions of the people in my life that really matter to me. When I was 15, I never thought I would live to be 21. I was wild and crazy, out of control. I have written about the trouble I got myself in in my Navy Blog. That trouble lead to a wonderful Navy career of 40 years. When I was 30, I never thought I would see 40. I did,. After 40, I thought I would live forever, I will not. That's not a news flash to me, I always knew there would be an end. And, for a long time, I have not feared death. Working in gun mounts and with explosives in the Navy, I was always a half step away from death's door. My combat missions always put me on the knife edge of life and death. I was OK with that, I actually embraced it. That emotional high made me feel "Alive" and I liked it!

Now, at 59, almost 60, I am facing my own demise from an enemy that I cannot combat. I have no defense, not pistol to return fire, no maneuver that will enable me to safely run away to fight another day. This is "IT". I have written before that I consider this disease a "blessing" because I can concentrate on life, my relationships, and enjoying my final days. I still feel that way, but, as things progress, I feel increasingly helpless in dealing with my disease. I cannot even effectively manage my own medications anymore. My memory skills just cannot handle that simple task. Thank goodness the Pharmacist that helps me knows what I am going through. Otherwise, he would probably turn me in for selling prescription drugs on the market! Again today, I walked up to the Farm Fresh Pharmacy counter and asked for my refills. He gently told me that he filled them last week. I left perplexed and went home to discover what I did with those pill bottles this time! I found them and in doing so, came to the realization that I cannot take care of myself anymore. That realization hurts more than anything else. I am now dependent on someone else for my second most basic needs. Yes, I can still go to the bathroom on my own, but that will change too. Oh I hope that takes a long time! Maybe my memory will fail totally before I need that help.

I am increasingly despondent and depressed, unable to sleep through the night, disoriented in my own home, and angry at the entire situation. Rationally, I know this is a normal phase of my malaise. Emotionally, I am a wreck. And this is still the first half! Much like a Redskin's game, I am NOT looking forward to the second half!

Again, I am not looking for sympathy, I am reporting, for any one's benefit who is interested, what I am going through and what I am feeling. Jerry and I are still going out and doing fun things. we went bowling this week and I had a great time. Of course, I had to use a 13 pound ball instead of a 16 pounder, and I could not do a three step approach for fear that I would fall, but I still broke 100 each game! Not Dick Weber or Earl Anthony level, but not bad for not bowling for a few years. One of these days, I am going roller skating again! My neurologist says that is a core memory for me since I started skating at 3 and skated competitively until I joined the navy. We will see if she is right! I will keep you posted.

Tuesday, September 28, 2010

Lewy Body Dementia, What is it, How long do I have?

If you read my last post, you now know that the doctors at UVA have confirmed what my neurologist and I thought, but would not say, I have Lewy Body Dementia. I added an explanation from WEBMD as a Link on this Blog. If you are interested, I suggest you read it. The information from WEBMD is sobering, to say the least.

Lewy Body Dementia starts out as a memory issue. That makes sense since the first problems I documented were my problems driving on Interstate 64 and not knowing where I was where I was going, or where I was coming from. The first neurologist I saw after a few of those events, gave me the "remember these three things" test, and told me I was fine. Two or three years later, when I started to develop muscle rigidity on the entire left side of my body and I was forgetting more and more, my family doctor, who is an exceptional professional, sent me to another neurologist, Dr. Bowles, who did not discount my symptoms as a fraud and did 9 months of testing. She tested me for everything under the sun and at first came up with Parkinson's with Dementia. But she was not satisfied with that general diagnosis and kept trying to find the real issue. She sent me to UVA for a second opinion, and after their testing and evaluations, Lewy Body Dementia is the call. The first neurologist I saw is the norm! I have read on the Lewy Body Dementia web sight a number of family stories about parents that faded away as their doctors told them they were fine. I was blessed in that I only had to go to two neurologists to find one that believed me.

All dementia's have Lewy Body connections. Lewy Bodies are a protein jumble that disrupts brain function. They grow at an increasing speed as the disease progresses and result in loss of memory, Parkinson's symptoms, loss of bodily functions, and eventually, death. That is, unless you die from a complication like aspirating food and either choking to death of developing pneumonia and dieing from that. No big deal you have to die from something!

How long do I have? That is the million dollar question. The WEBMD article says that the normal run of LBD is 5-7 years from diagnosis. That seems short to may of you. But the same article states that there are documented cases in the study that had patients live as little as 2 years and as long as 20! Evidently GOD gave me a very good memory. You will remember that I told you all before that I had near total recall. In the Navy, I could easily memorize complicated electronic and hydraulic schematics, integrate them for the operational sequence of a very complicated gun mount, and have them in my memory indefinitely. After I retired, I went to work, briefly, for GEICO insurance. They sent me to their Material Damage Adjuster's course. I remember the president of GEICO, Mr. Tony Nicely, telling me; " Don, we won't hold it against you if you fail this course since we only send college graduates to this course." Well, let me tell you, those college grads were dropping like flies, because they could not hack 10 hours of school and 4 hours of homework a day! For me, it was gravy! Just like going to Mk 42 Mod 9&10 "C" School. I remember one night we had to memorize about 200 parts of the GM Hydromatic transmission for a test the next morning. Those college kids were cutting their wrists! So, I sat them down in my hotel room and taught them how to study and memorize. Some of them did OK, most did not. I aced the test, as I did most everything they through at me. AT graduation, Mr. Nicely asked me; "Don, how did you do so well?" I told Tony, they need to hire military retirees not college kids if they want people who will buckle down and learn. He did not take my advice. By the way, I wrote the highest score for the entire 6 week course ever written. And I will bet that score still stands today.

So, anyway, I started with a remarkable memory, so I have a long way to fall. That coupled with my belief in GOD'S will and my positive attitude may put me on the long side of the averages. But, it may not. Only time will tell. But I have not given up, slowed down, or even considered either path. I will charge on, and do the best that I can as long as GOD lets me live. That is the best I can be and what GOD and all of you expect from me. So, to answer the question, how long do I have? As long as GOD gives me. Not a day less or more. Just keep that in mind when you want to feel sorry for me. And for those of you who do not have LBD or any other terminal disease, you have the same limitation that I have. You only have as long as GOD gives you. Think about that when lay down to go to sleep tonight. It is truly a sobering thought. One that I have already dealt with, have you?

Monday, September 20, 2010

The Diagnosis is.. !

My medical situation over the past three years or so has reminded me of an old joke; It seemed, two friends were hiking in the Arizona desert. After a while had passed, one of the guys needed to relieve himself, and found a private patch of cactus to accomplish the task. As he was doing so, an unseen rattlesnake bit him in the place, any man would not want to be bitten by a poisonous snake. He ran to his friend in horror, screaming, "I'm going to die!!!" His friend, knowing a little about first aid, calmed his friend, got him to lay down, covered him from the onslaught of the sun, gave him some water and ran into the nearest town to get some medical help. Try as he might, there was no doctor, only an old timer who told him; "when someone gets a rattlesnake bite, the treatment is to use a a sharp knife, cut an "X" on each fang puncture until you draw blood, then suck the venom out." The un-bitten friend was horrified, but he ran back to his friend. When he got to him, the stricken friend said; "What did you find out?". The other fellow said; "You're going to die!!!"

As you know, today Linda and I went to UVA to finally get our "Second Opinion". I must say, both doctors were very professional, caring, and attentive today. Their demeanor and my treatment was exactly at the professional level that my wife and I are used to from Dr. Bowles and other fine physicians. The Clinical Neuropsychologist explained the cognitive test results, explaining that while I was still functioning at a high level of memory and function, it was apparent that I was not functioning at the level that I was used too. He also commented that during the tests he noticed periods of slowdown and confusion, that I did recover from as the tests proceeded. The the 14 year old, Neurologist, explained how all of the findings from all of the testing that was done before by Dr. Bowles' team and this new testing, coupled with the memory and behavior changes reported by my wife and myself fit together to paint a picture. That picture is not what we had hoped for, but, we now have a clear cut diagnosis of what I am facing.

The 14 year old, who's real name is Dr. Voss, explained that key points like my REM Sleep Disorder, (that's when I punch Linda in my sleep acting out my dreams) and my violent reaction to one type of drug that Dr. Bowles prescribed a while back, coupled with my issues of loosing track of time, where I am at, and my surroundings, and my hallucinations, tracks clearly towards the diagnosis of "Lewy Body Dementia". Lewy Body Dementia (LBD) brings with hit many of the Parkinson's issues, like the stiffness, loss of balance, some shaking, and night shaking, all of which I already have. Where LBD differs is the length of time that it takes for the disease to progress. LBD is much faster, start to finish, than Parkinson's with Dementia. Dr, Voss noted that Dr, Bowles did exactly the correct thing by getting me started on Razadyne and Namenda, early. This aggressive drug treatment will slow down the progression of the disease, as much as is possible, today. My research on line, using WEBMD and the Lewy Body Dementia Society web site has revealed that LBD takes between 2 and 20 years to run it's course. Good news, since this probably started about 3 years ago. I already have the low number beat!! And that is how I will continue to approach this. I am not going to give up, quit trying, or be defeated without a fight. I have a wonderful medical team, the best wife in the world, a great, supportive family, a supportive church family and many friends to depend on, and I will.

So, while the news is not as positive as some may have hoped, it is good to finally know the exact cause of my problems. For this I am grateful. I will keep you all informed through this blog and other means of communications. But don't call this Thursday morning, Jerry and I are going golfing!

Thursday, September 16, 2010

The Effects of being BUSY!

As I wrote recently, it has been a BUSY summer. Busier than I can ever remember. Well, busier than I can remember now! I just completed our church's first Senior's Health and Safety day. We brought in a number of senior health and welfare specialists to inform the community of the many services, many of them free or at a very reasonable cost, that are available in the Virginia Beach area. This city is full of honest good deals for seniors! I had plenty of help pulling this event together from many quarters. Early in the planning, our long time, very close friend, Marcia Hart, told us about the City of Virginia Beach Senior Services Coordinator, a wonderful lady named Nancy Allen. She is a treasure trove of information about senior services. Not only that, but she is the administrator of a great Senior's Respite Care Program. This can be a life saver to a care taker. Imaging, being able to leave your husband or wife, in loving caring hands, to go out and have a social outing, go to the doctor, or shop, in peace. How much does this cost, depending on what the family income is, as little as $3/ hour and at the most, $8/hour. Now that is reasonable.
In any case, I was busy, maybe even overwhelmed. At about 10 Am, I was having real problems forming sentences and I really wanted to just leave, go home, and hide! But, "Spot Light" syndrome kept me functioning, to a point. However, after the event, was a different issue. We returned home at about 2 PM. We immediately went to bed and slept, rested, tossed and turned, until about 4:30 PM. We both got up, at a small dinner, and went back to bed until 8:30 PM. We then got up and tried to reconstruct the day, going back to bed at 11:30PM and sleeping until this morning.
Today, I had great difficulty with my situational awareness. I just could not keep track of what time it was or what I was doing. I tried to accomplish some chores around the apartment while my wife went to her Bible study, but I was truly startled and shocked when she walked into the apartment at 11:30AM. I was sure it was earlier than 10 AM! I was truly lost in time. This is not a totally new issue, but today it seemed more deep, more disturbing. It actually consumed me for a while.
We went out this afternoon to run some errands, and I even gave up the driving duties to my wife, because I did not feel "Safe" driving the car. Now that is a first for me. I am always the driver and only give up the wheel after a great amount of prodding from my wife. Oh well, better safe than sorry.
Next Monday, we go to see the 14 year old at UVA. This should be our last visit to UVA. I am done with their uncaring attitude and "Text Book" medicine.
I will keep you all informed. Thanks for every one's help with the Senior's Day!!

Wednesday, September 1, 2010

The month of August

We have really been on the go this month. First, the grand children were in town for Surf Camp and their annual trip to Triple "R" Camp. This is a great Christian camp, 6 days and nights of fun activities and spiritual enrichment. Both boys love Triple "R" and always ask to go back! After that three weeks, we headed up to Canandaigua, for our traditional week of camping on the lake. We rent a cabin and spend the week enjoying the peaceful surrounding. This year, we did something different. Linda decided it would be better for me to stay at our kid's house at night. It would be more familiar surroundings, and I could have my trust dog, Marcel, with me. So, the first night, as it began to get dark, I went back to the house, alone! I quickly found out that was not going to work. I was completely disoriented in the house and when I turned the lights out, to go to sleep, I was terrified. So, the first night, I spent up, watching TV, with Marcel. I finally went to bed at 5AM, with the lights on. The other nights, Linda went back to the house with me. That worked much better.

After, 6 days at Canandaigua, we headed to Cleveland Ohio, to see my family. It was a wonderful reunion and we truly enjoyed seeing everyone. My sister and Brother are both getting on in years but they still are doing very well. I got to see my Brother's, Son's, new twins! They are 15 months old and precious. After 3 days in Cleveland, we headed home, through some of the worst traffic I have seen. We arrived home late Monday night, exhausted. Tuesday was a blur and we are just now beginning to unpack.

The things we learned from this trip are; I do not do well, being away from home and my routine for a long period of time. Ten days is too ling for me to be away from home. This will direct our future travel plans. I spent a good portion of last night awake, because of dreams. That was a problem that had began to dissipate somewhat, but it seems to be back in full force now. Another thing I learned, or at least was reinforced, was while I have little or no desire to do much of anything, I will go along with the group, and enjoy myself. When we went out to eat, Linda did my ordering. I just could not settle on what I wanted. But then, decision making has been a problem for a while, and it seems to be getting worse. I also discovered that crowds make it difficult for me to participate in the conversation. One on One, I do fine, add the background noise and I get confused and shutdown.

Again, it was a great trip, and we learned a lot about where I am. Next year's trip will have to be shorter, and less busy. But that is normal for the progression of dementia. Just the same, I am glad to be home.

Thursday, August 5, 2010

My FIRST Dementia related injury.

There is a nurse, from my insurance company, that calls me every month to see how I am doing. I believe I have discussed her and the Assurance Program of Blue Cross before. She is very caring and offers good advice and a caring ear to complain to. She always asks me if I have been injured or have been hospitalized due to my Parkinson's or Dementia. Up to now, I have always had to say no, thankfully. Well, last Monday, that all changed. The grandsons are visiting us for a couple of weeks and Grandma has all sorts of activities planned for them. This week was surf camp, and Monday was cool and wet. As the boys were surfing, Linda and I decided to go back to the car and get warm. We put some things in the back of our Forrester, and I remembered that she had a rain jacket in the box I keep in the back. So I rushed to the back of the car, complete oblivious to the fact that she was forcefully shutting the tail gate. You guessed it, lots of blood, a ride to the Hospital in an ambulance, and 6 staples in my forehead. Not to mention a pretty good headache. I am OK, and the staples look like a new fashion statement, but the next time I get that call, I can say, Yes, because I was not aware of my circumstances.

Saturday, July 24, 2010

NEW ISSUES

I guess I have been writing a lot lately, but that is because, there seems to be plenty happening. As I have said in my Navy Blog, I have a friend staying with us this weekend. We have had some good time together, but he is really here for a friend of his wedding. He and I stayed up a little late last night, talking Navy, about 11:30PM I went to bed and right to sleep. I woke at 5:00AM and I thought wow, I slept all night. I went to the bathroom, went back to bed until 7:00AM and then got up and made coffee. I woke my wife at 8:00 AM and told her how good I felt sleeping all night. She told me; "No you didn't!" I know I was dreaming, I always do, but the content of those dreams is lost to me most of the time and certainly last night. But, according to my wife, I was laying on my back, moving my hands and arms, like I was trying to repair something or put something together. She said she held my hands down a couple of times, trying to calm me, and as soon as she let go, I went back to "Work". I have no idea what I was doing, there was no finished product when I got up, but I did feel rested and good! I sure hope I work tonight too!

Thursday, July 22, 2010

Dementia, the beginning

I was reading over some of my first writings on this blog, and I discovered that I have never written about the first Dementia symptoms. That surprises me, but maybe not. I DO forget things. While my wife has some recollections of memory issues after a severe car wreck, not my fault, I was rear ended at a stop light. Those memories are not in my memory bank. The first real issues I remember is driving down Interstate 64, in Norfolk, a route I have taken almost every day since 1983. I was driving, and all at once, I did not know where I was going, where I was, and where I had come from! It was very frightening! I remember thinking, just keep going and this will make sense, and, about 5 minutes or so later, it all came back to me. I pretty much "Blew it off" and credited it to stress, working too hard, or need of rest. Over the next few weeks, the same thing happened a couple of more times, so I told my wife about it. Naturally, she was concerned and made me promise to see my doctor. Then on a Saturday, my son and I were coming back from a hardware store, and as I pulled up on the freeway, I told my son; "I don't want to alarm you, but I don't know where we are or where we are going." He said; " We are going home Dad." My reply was; "Fine, where is that." It is true, I did not know where I lived. In any case, I saw my GP, a wonderful, doctor who I trust completely. He sent me to a neurologist, who after two appointments of 15 minutes each, dismissed me and said there was nothing wrong with me.

So, I continued on, having memory issues, getting lost, having periods of freight and confusion, and having this "Numb" feeling in the front of my head. After a year or so, I began to experience stiffness throughout the left side of my body. Arm, leg, shoulder, even my foot. I went to see my GP again, and he said, I think something is going on here and sent me to Dr. Mary Bowles, a neurologist who actually does tests! I answered more questions, questionnaires, and had more tests, CT scans, MRI's, X-rays, blood tests, cognitive skills tests, computer based tests, WOW! She and her staff ran be through the ringer for about 9 months. That lead to me trying Sinemet, and gradually, the stillness went away. She then went to work on my memory, and started me on Arecept. I must say, I don't think Arecept helped all that much. Later she shifted me to Razadyne and added Namenda. That made a marked difference in my memory function and made me capable of working and functioning more normally. But, not even those medications are beginning to loose their effectiveness as, I was told they would. I guess I have been on the combination for about two years. Now, I have more problems finding words, staying on task, remembering what day it is, or where I am. I can't remember passwords or learn new skills. I have REM sleep disorder and my wife has the bruises to prove it. My fine motor skills are getting worse, as a Gunner's Mate, I tell folks; "My fine synchro is out of adjustment." But that is just the progression of the Dementia, Lewy Body Dementia, Alzheimer's, or what ever they want to call it.

The thing I like the most about Dr. Bowles is that she is aggressive and she believes what I say. Of course, my wife is in every appointment and Dr. Bowles questions Linda also on my progress. I have been examined by neurologists from the Veteran's Administration and from UVA, (see other posts) and they all have about the same diagnosis. The neurologist the VA sent me to told me to retire, and enjoy the few good days I had left! A pretty strong and truthful recommendation, that I took.

This has been a long journey, and I really can't tell you when I actually started. All I can do is tell you where I think I am now. In the Navy there was a saying; " The only constant is change, and it is variable." That about sums up the rest of my life, and I am OK with that. At least I am not bored.

Life's decisions

Linda and I retired in January of this year to be together and enjoy each other. We moved to this over 55 apartment 5 months ago to simplify our lives and to take the burden of home ownership off of her and me. God saw fit, to sell our house in 3 months, with a good selling price. We believe that God has given us an opportunity to spend some time together before my Dementia and Parkinson's gets worse. We also believe, based on much research from WEB MD and a number of books, along with input from my doctor, that I may have as little as 5 good years, before I am debilitated by these conditions. These are all facts.

In our 37 years of marriage, I have made 7 major deployments, numerous training deployments, became a tech rep for NAVSEACENLANT and it's follow on names, and traveled world wide, and spent 5 weeks in Bahrain on assignment just 4 years ago. She and I have been apart much of our marriage and now we have made the decision that our time together will be uninterrupted! There are things we want to do, places we want to see, and quiet moments we want to share, before my memory slips completely away. Don't get me wrong, I loved my career with the Navy, I am proud of what I did and what I stood for. I hold the men and women I worked with and for in the highest esteem, and I would do nothing different. My statement here is, now, with God's grace, it is time for Linda and me.

So, from now on, our time is our time. No more projects for causes, no more events to plan, no more schedules to keep. We are going to do what WE want to do, when WE want to do it. That's why we retired and moved so early. We are blessed to know what the future holds for me health wise. This may progress slower or faster than the medical pro's say, but it will progress. So, please don't take exception if I say "No" to helping you with a new project, or going to do something I don't want to do. It is not personal, I am just working on my bucket list, and I know I have limited time to do some things Linda and I have always wanted to do.

I told my son, who is having much difficulty with my diseases, that his mom and I were blessed to know what the future held. We can plan, reduce the surprises, cherish the moments, and have time to love each other, one more time. He will understand, someday. I hope others of you will understand now.

Wednesday, July 21, 2010

It seems like yesterday, and it was?

My Mom, died from complications from the treatment of uterine cancer in 1976. The radiation treatment that was used in those days was very unfocused and wide spectrum. The radiation from the cancer treatment damaged every organ in her abdomen and she died of uremia because her bladder was gone from the radiation. I paint this painful picture, because I can still see and hear my Dad standing over my Mom, His wife of 48 years, as he pinched her big toe and said; "you'll be OK Evelyn, all you have to do is get up and walk around the block!" He did not understand what was happening to her. Heck, none of us did. We all wanted her to be better, but that was not to be.

Friends and family say the same sort of thing to me, on a regular basis. "Don, all you need is a computer calender and your memory will get better." or; "You need more discipline in your life!" First of all, those of you who have known me for more that a few years know I was one of the most disciplined, principled, people you will ever know. You can't make Master Chief in the United States Navy, in 14 years 6 months, and not be disciplined. If you don't understand the military, you will not understand my level of personal discipline. Navy Regulations, rules, tradition, responsibility, uniform regulations, physical requirements, ruled my life. I would not even hold my own child when in uniform because it would hinder me from saluting! I am the picture of discipline. But, parts of our bodies fail. Why? Ask GOD, it's his plan. There is a verse in the Bible that tells us that all the days of our lives are written in GOD's book BEFORE we are even conceived! GOD knew, before I was born that I was going to be a Navy Master Chief and He knew I was going to have to deal with Parkinson's and Dementia. Nothing I have done, or can do will change that. Furthermore, it is getting worse!

I realize I have written about this before, but people close to me, just don't understand what I am going through. So some of my friends, just like my Dad, who believed that a good, fast walk around the block would cure what "ails" you, believe if I kept a calender, a list of things to do, or if I was just more disciplined in how I conducted my life, I would get better. Well, my friends, just like Mom, I am not going to get better and the end product of this is that I am going end up drooling on my shirt and peeing in my pants! As my Dentist, who is also a friend said; "If you drool enough, no one will notice the pee!" That's my goal! But I probably won't know anyway.

So, while I know your recommendations are offered with an honest desire to help me get better, all they do is make me feel like you think I am a liar, or a malingerer, or a gold brick. It is like you feel that if you just slapped me, like General Patton did to that fellow for having battle fatigue, that I would snap out of it and get back to normal. This is normal, and it's on a sliding scale! and the slide is down! And frankly, I am getting tired of being called a liar! I have had more medical tests, cognitive skills tests, and seen more Neurologists and Neuropsychologists than I ever knew existed. It took my Neurologist and her team 9 months to diagnose this. The Federal Retirement System, under the control of the Office of Personal Management granted me a disability retirement on the first request. That never happens, so did Social Security. You know they never go easy. So why do you continue to question my illness? Please, accept this, so we can move on to living with my condition instead of trying to cure it. There is no cure! I have accepted that, and so should everyone else.

Thursday, July 15, 2010

Progress or progression

This has been an interesting week to observe. I say that because sometimes, I actually feel like I am watching myself progress through this portion of my life from a distance. No, I don't think I am crazy, I just think it is a perspective I have developed. As I wrote last, we had a wonderful time with family and all the "Tourist" activities that a person who lives in a resort city never enjoys. That is strange in itself. We live here, yet we never went para sailing. I have never rode a jet ski either, I would like too, but I have never done it. In any case, I have been "recovering" from all the activities, while planning two big church events, and getting ready for our grandsons to arrive next week. So, to say the least, I am not sitting idle, but I am making sure I get my afternoon nap.

Back to the observation issue. My dreams have become more disturbing and more frequent, and even with the increase in the "Don't beat Linda Up" drug, I am constantly being woke up because of these dreams. Normally, I wake up three of four times a night. Linda says I twitch and move around, but she has not put her catcher's mask back on, yet. I have commented before on the fact that I have lost the motivation to do much of anything. If Linda does not plan it, I don't do it. I would be perfectly happy to sleep, sit around, and do nothing. But she has a way of keeping me busy with daily lists of "Chores" that have to be done. I don't actually know why, but she says they do. For instance, She decided I need a Passport. WHY, I am never leaving the continental United States again. Just the same, we applied to renew my Passport. Church projects keep us busy and that is good. I feel more engaged when I am doing something for the Lord. My best friend, Jerry, who is fighting his own medical challenges is setting up a scheduled "Shooting" time for him and I. So many of the times that I go shooting now, I am teaching someone. And I get little trigger time. But I still really enjoy shooting. And yes, I am still deadly accurate.

So, as I see all these things unfolding, and me being active within these little structures, I still feel like it is not ME doing the activities, but someone else. I still get tired from them, but if you asked me if I did this, or enjoyed that, for a moment, I have to stop and think; "Did I do that?". Again, since I have few points of reference, I wonder if other Dementia patients have this sensation. If you know someone who experiences this, let me know.

As a post note to some earlier ramblings about my bad experiences with UVA Medical, they have struck again. The man-child with the PHD in Neuro-Psychology assured me that he, the 14 year old Neurologist, and Linda and I , would have an appointment to discuss the cognitive scores test and their diagnosis the second half of July. We explained that we had company the July 4th week and than the Grandsons all of August. So, yesterday, I received my letter from UVA with the appointment information. You guessed it, 2 August. So, I called the number in the letter to change the appointment, played phone tag through a number of departments and finally got hung up on! I called the semi-literate woman who is the live voice and she finally got me to the Neurology clinic, where the receptionist had a good laugh at my telephone issues and the scheduling problems. Is anyone at UVA concerned with the well being of the patient. I called a patient onmbusman, who assured me she would get to the bottom of it and call me back yesterday. Just like the little boy who swallowed the quarter, no change yet!

Yet, as much as UVA frustrates me, I still have a surreal feeling about the contact with them, and my visits there. Yes, I know I went there, but it seems almost like a dream. So, is this progress or progression. We will see.

Friday, July 9, 2010

Life's blessings

We just had the apartment full of family, for the Fourth of July holiday and it was great! I have to tell you that I had more fun, did more things, and enjoyed myself more that I have since last summer. We went Para sailing for the first time!! My wife and I had thought about it once or twice, but we did it. We went up 1000 feet! OK, they let out 1000' of line and the boat was going forward, but we were up there. I asked the crew to really dunk us in the ocean, they did! It was great! Now, we probably would not have done that if we did not have all the company, but they were interested and it all fit together. I also got the opportunity to take my Nephew's 10 year old son shooting for the first time. I also took my other Nephew and his wife shooting. They have a son on active duty in the Army who has just returned from his first tour in Iraq. It was good for them to shoot the same weapons their son uses everyday. I also got 9 holes of golf in. I have not golfed since I was diagnosed with PD and Dementia. I even parred two holes! I think I will go again, soon. All in all, it was a wonderful time and I thank my Sister for lending me her family for 6 days. Now I am looking forward to my son and his families visit in August. We have more adventures planned.

Family is important, it is refreshing, and it gives you strength. They understood, as much as anyone can, my restrictions and limitations and tried not to overload me. I did very well, thanks to their understanding and my Wife's constant care. Which is really the topic of this writing. My wife like so many other loving spouses faced with the issues of their spouses disease, has had some denial issues. Yet, she has been supportive, loving, and caring. But in the past month or so, Linda has really began to deal with this challenge and has taken the lead in my medical care and well being. She has become very protective of me. Making sure that I am rested enough, fed well, and comfortable. But most of all, she is loving and gentle with me. We have been married for over 37 years, and we have been through plenty. Gee, I deployed to Viet Nam less that 8 weeks after we were married. We had 7 major deployments and the numerous out and ins that make up shipboard life. I moved her from her beloved home state, to Great Lakes, Illinois. That's grounds for divorce alone. As I have written before, we have bought, sold, and moved from more houses since I retired from the Navy than we did while we were on active duty. We have owned more cars that "Little Joe's" used car dealership. Linda has had to deal with my many faults, and always did so in a gracious, supportive, way. She has a way of letting me know when I am wrong, comforting me when things have gone wrong, and rebuilt my foundations when they were shaken. Now, as always, she has taken the lead as my cheer leader, medical advisor, care taker, and as always my best friend. Our life has had it's bumps and ruts, but even with these medical challenges, I really can say, this is the best time of our lives. Over 37 years ago, on a blind date, on Thanksgiving Day, GOD brought us together. I am eternally thankful for that and I am eternally grateful for her help, love, and steadfast companionship. I love my wife, and that says it all.

Sunday, June 27, 2010

Anger

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.

Monday, May 31, 2010

Truth, from friends.

After my last post, someone commented that I was independent and hard headed, or words to that effect. They also commented that that was typical for Gunner's Mates. I gave those words some very serious reflection, and I have came to the conclusion, that they are right! Every successful Gunner's Mate that I ever knew was independent, decisive, hard headed, and would not give up or let anyone help him. In a combat situation, or just leading men in gunnery exercises, small arms training, magazine safety, ammunition handling, line handling, underway replenishment, any dangerous situation, that head Strong determination is a good thing to have. When I was the leading Gunner's Mate in any situation, from the time I was a GMG3, there was not doubt about who was in charge!

Now, however, it is becoming painfully obvious that I am not in total command of what is happening. My body moves where IT wants to, all too many times. My mind can't recall those facts that I used to be so quick with, like what day it is or where I am. And sometimes, my body forgets that I am not sitting on the toilet. A new surprise that this challenge has provided me in recent weeks. My reaction to all of these changes, up to this time has been to, in my own way, deny that I am having these problems, put on a front, live in "Show Time" as I have discussed before. This actually has caused me more frustration than the disease itself. For every one's sake, I try to be "Normal".

Well, I am not "Normal", I am me, and this is where I am at this time. So, from this point on, I am not going to be so independent and hard headed. I am going to let people help me more. I am going to let you see what is really happening. My wife knows, for the most part, but I even shield her from some things. But not anymore. I believe it is time to be honest and open about everything that is going on. Those of you who read my blog often are probably saying, how much more honest and open can he be? The issue is not with what I tell you, it is with what I let people see. I was on that ladder, with a big reciprocating saw because for me not to be on the ladder would make me admit I was not the man I used to be. For someone who believes in "Macho", that's a hard step to take. In my demented mind, I'm still the same tough, gristly, salty, Gunner's Mate I was at 20. I still think I can kick some one's but! Boy is that a fantasy.

So, from now on, I promise to be more honest and open with myself, and those around me. I'm not going to give up, I'm just going to scale back, based on the progression of what ever they finally decide I have. And to the person who provided me that feedback and insight, thanks!! I needed it and I know it was offered in love and care.

Thursday, May 27, 2010

A tough couple of days.

Things had settled into a fairly comfortable routine. I was learning to deal with where I was on the progression scale of my issues. At church, we finally decided to tear down the old shed. I ordered the dumpster and last Saturday, we really got a good start thanks to many folks efforts and a rental reciprocating saw from Home Depot. Wednesday, the Pastor and I rented another saw and got to work cutting more panels down and dropping the roof rafters. That's when I got in trouble. The extension ladder was leaning on the roof joice, and I was cutting rafters. Yes, I can hear all of you saying, what were you doing on a ladder?! Hey, I felt good, and it felt good to be doing something physical and useful. In any case, I cut the joice, the joice collapsed and the ladder, the saw and me, fell about 12 feet!.. The ladder got the worst of it, it is bent beyond repair. The saw made it OK, and I did too. Actually, it was fun. Yes, fun! I was alive again, doing something. I got up and kept working, for another hour or so. Yes the Pastor was concerned. But I assured him I was perfectly OK, and I am. A little sore this morning, but no lasting damage. And I still think it was fun. My complaint is, I am OK falling off a ladder, but my wife and my neurologist won't let me drive a race car with Richard Petty's Driving Experience. I think I will sneak out and do it anyway!

On a more somber note, we had to have our cat, Missy, put down today. She was 18 years old. Her kidneys failed, she lost 33% of her body weight in about two weeks, and this morning she could not walk. She had a good, long life. She survived cancer surgery almost ten years ago. Our Vet did not think she would live 6 months after that surgery. She lived almost ten very good years after that surgery and she was spoiled every day of them. Just the same, this was very sudden and my wife and I are in shock. It seem surreal, like a bad dream. We both loved Missy and will miss her. Because of my condition, we have decided not to get any more pets. The stress of loosing them is just too difficult for either of us. The emotional investment is just too much. We still have our miniature poodle. He is seven and doing quite well. I am sure he will miss Missy too. We rescued her from the street, 18 years ago. She was starving to death, skinny, and scared. We actually got caught climbing under our State Trooper neighbors police car, trying to catch her. He said, "I hope you have a good reason to be messing with that car!" He saw that we did and helped us corral her. She was a lovely and loving part of our family, and she will leave a hole that cannot be filled. Good bye Missy, I love you.

Saturday, May 15, 2010

Progression continues

My wife and I have recently noticed a marked decrease in my mental abilities. My bad dreams are increasing in intensity and number, interrupting my sleep. My anger and frustration at the world around me has increased. No I have not lashed out at anyone, but I want to. Even my mobility is decreasing and I find myself stumbling more and nearly falling while just standing. I was reminded by my wife tonight that I write this blog to chronicle my progress for my mental well being and for others to see. We have even began to discuss participating in a study to see if what I am going through can't be used to help others. Sort of being a live "Test Dummy" for medicine! I am OK with that. But what I am not OK with is my friends and acquaintances doubting my disease. SO, I will explain what happens when you see me acting normal. I recommend that you go to the Lewy Body Association's WEB site and look at the FORUM sections. There are a couple of good articles describing "Show Time". It seem, at the stage that I am at in my disease, that I can carry on normal or near normal conversations, making you believe that I am completely following what you are saying, and making sensible statements. That period of time of relative normal cognition is called "Show Time". Not my term, but what the medical field calls it. Many times, after we have talked, I will not remember what we talked about, or even if we talked. My personal perspective is that this "Show Time" comes from an inner desire to appear normal. We all have that desire. Remember High School?! Or, why don't non-Christian people swear in church? The answer to that is it is not expected of us, so if we did swear, we would not look normal in our environment. I could write a thesis on this topic just based on walking around a Navy Combat ship with a Chaplain. As you approach, before they see the Chaplain, there is cussing, crude jokes and stories, maybe even some Playboy magazines out. When the men recognized the Chaplain, the cussing and stories stop and the magazines disappear. It did not matter what denomination Chaplain it was. It always happened that way.

I am experiencing this "Show Time", and from my research, most Dementia sufferers, are the same way. In later stages, we don't realize what is normal or expected, and therefore stop trying to meet that unattainable standard of the outside world.

But trust me, I am struggling to maintain what is left of my status quo. My wife drives more, I don't go out at night, I don't want to do much, and I have troubles remembering the simplest things, like what day it is. I spend a lot of my mental time in the past, thinking about my Navy days, early married days, and even my childhood.

I credit my Family Doctor and my Neurologist for recognizing what was happening to me early enough to get me on medications that would maintain my ability to express myself, understand some of what's happening to me, and give me time to slowly slide into the latter stages of this disease. My wife's father had Alzheimer's. His wife covered it up for a long time, and after her death, and the shock of that to his mental ability, we all recognized, way too lat, that he was in trouble. Of course, the medicines that I am taking did not exist when he was alive, so I am blessed and so is my family. At work, the first person to notice what was happening with me was the real brains of the Search Radar Branch, Don Bolick. Since he and I worked so closely together he first caught the little mental mistakes, the lost knowledge, the inability to do my job effectively. I could "Fake it" with others, but not him. We were and still are that close.

I guess the purpose of writing this posting is two fold. To let everyone know what I am really going through and to thank you for caring enough to wish I was really OK. And the fact is, I am in good shape for the shape that I'm in. I will never be better than I am today, and I will get worse before this is over. Everyone needs to understand that and let me deal with this disease on my terms. I don't want to appear mean, ungrateful, or disrespectful. I love each one of you. But I am dealing with a terminal, progressive, disease. That's the fact that we all have to face, together.

Sunday, May 9, 2010

Progression..

Regardless of what the medical profession decides the final name of my disease is, Lewy Body Dementia, Parkinson's with Dementia, Alzheimer's, Frontal Lobe Dementia, what ever, it is progressing and I see it from within way more that people see it from the outside. Lately, I have noticed a severe depression every night, starting when the sun goes down and lasting until I go to sleep. It colors my mood, my thoughts, my desire to do anything. Anything I watch on TV that is the least bit tense, sends me deeper into this darkness. I feel hopeless, alone, deserted, and worthless every evening. Sometimes, I can escape into my memories of the past, most times I cannot. I feel like I desperately need to cry, but I cannot. I want to scream, but I don't. I find myself staying up later and later. When I go to sleep, I dream vivid dreams that resemble real life. Sometimes they are good and comforting, but lately they too have been depressing and emotionally stressful. I write this because I know some who read this Blog are caretakers of individuals with the same issues. I am asking for advice, insight, and help.

During the day, the majority of the time, I fell good, on an emotional even keel, and in control of myself. But I am beginning to dread when the sun goes down. Any input would be appreciated. Thanks.

Wednesday, May 5, 2010

Another stress gone!

As I said in my previous post, GOD'S timing is perfect and we need to have the faith to trust HIM completely. When the prospective buyer of our home said they wanted to close on 5 May, a mere two weeks from the contract being offered, everyone shook their heads in disbelief. Today, at 2PM, we signed the legal documents closing the sale of our home. Done, Complete! This is a huge stress removed from our minds. We have been worried, without cause, over this sale. Remember, we moved to our retirement apartment in early March. When we signed the lease for our apartment in February, the house was not even on the market. Not to mention the terrible housing market issues. But, GOD brought us a wonderful realtor who worked endlessly to sell our home. She even planted azaleas and flowers, HERSELF, to enhance our homes curb appeal. Now that's a dedicated professional!

So, as of today, we are debt free, living in a perfect community, without stress, having a great time, and ready to enjoy the rest of the good time that GOD gives us. Yes, I still have mental and physical issues that are annoying. Yes, they are progressively getting worse. But, I am having the time of my life. Linda and I really enjoy being retired. The freedom to do what we want, when we want. We have a trip to Iowa planned for this summer top meet some relatives that we did not even know existed. We even plan on going to the Barrett-Jackson Car auction in Scottsdale, Arizona next January. If you are a car "Nut", you will know what I am talking about. Do I have issues, yes. Are we going to let my physical and mental issues dictate what we do or how we feel. No! We plan on letting GOD show us the way.

By the way, if you live in the Hampton Roads area of Virginia, and need a realtor, Ms Faye Ninos of Wainwright Realty is the best!!

More later.

Saturday, April 24, 2010

GOD'S Perfect Timing.

If you have been keeping up with our move to our retirement retreat, you know that one big worry was the sale of our home. You know this is a slow real estate market and not the best time to be selling, even with the $8000 tax break the federal government is offering. We have had our home on the market since February. We have had plenty of people looking at our home, but no real offers. We had been told that we were the "Second Choice" for a number of buyers, but still no offers. At the advice of our agent, we lowered our price a number of times, but no offers still. With the pending end of the $8000 tax credit, I was beginning to worry. Oh ME of little faith! Last Tuesday we received an offer that was very fair and we were ecstatic. The buyers need to close quickly and were already approved for their loan. The home inspection and termite inspections were Thursday, I said they were in a hurry. The appraisal will probably be this week. All is moving very smoothly and very quickly.

You may ask, why is everything going so fast now? Because this is when GOD had it planned for the house to sell and this is the family HE had planned to live in this home and benefit from all of the improvements HE enabled us to make on the house. I suffer, like many of you, from wanting to be in charge of everything, all the time. GOD has HIS plans and they are perfect. HIS timing is perfect. I need to be faithful enough and smart enough to let HIM solve my problems. If I worry, it will not make anything better. I cannot add one day to my life by worrying. So, I shouldn't. This move, and the sale of our home has taught me this lesson as never before. When we are at our weakest, GOD is at his strongest, if we will only let HIM be.

Friday, April 9, 2010

Our retirement retreat

Many of you know that Linda and I moved, very abruptly, to an over 55 apartment. It was a decision we thought and prayed about for quite a while, but just could not come to a decision about. Then, one day in January, we decided, very quickly, to rent an apartment in this wonderful community that we watch as it was built. Now, I must admit, the speed at which we moved is completely out of character for either of us. But we believe it is what GOD had planned for us. Since we moved in the first week of March, each day has been better, we have been more relaxed, and we have enjoyed life more fully. There are paths around lakes for walking. Benches and a screened in gazebo to relax in, a club house, a well equipped Fitness Center, a pool, that will soon open for the season, and... well, you get the idea. But what really makes this complex so beneficial to us is the staff. Of course, there have been a few minor things that leaked, did not work correctly, or needed adjusted, in our apartment. The maintenance staff quickly and efficiently addressed each issue. Today, I asked for help installing a medicine cabinet in the master bath. Just as scheduled, one of the wonderful maintenance folks came and helped me, really installed, the cabinet. There just seems to be no end to their helpfulness. We moved here because it was becoming more and more difficult for us to maintain our home as I addressed in past blogs. Here, there is no worry. The staff will come to the rescue! If you or your parents are considering retirement living, please consider an over 55 complex for them, or you. Do your homework, read the reviews online, talk to the residents already there. But don't think that home ownership is the only path to happiness in retirement. Specially if you or your parents have disability issues. It is nice to feel free to lock the door and go see the grand kids, or travel to where ever, not having to worry about the lawn, a broken pipe, or anything else. For us, this is real freedom. If you want the name of our complex, email me, and I will gladly give you the info.

Two bumper stickers come to mind. The first; "Whoever dies with the most toys, wins!" and the second: "If you die, we are splitting up your gear." It's not things that make you rich, it's friends. And when your time on earth is done, what you have accumulated will go to people who won't even remember you ten years from now. Trust GOD for your future, Trust Jesus for your salvation, and Trust the Holy Spirit for your advice in life. You will be much happier. I promise!

Saturday, April 3, 2010

The Last Move. Complete, I hope.

Sorry, I have not added to this Blog for a number of days. Time passes faster retired. The final pieces are in place in the apartment, after being without a couch for a month, our new sofa was delivered today. One thing is for sure, I am never moving that sleeper sofa myself! It weighs a ton. It is the new one with the sleep number mattress. I may have made a mistake. Making company too comfortable is always a mistake. Just joking. With the arrival of the couch, I could put up the last of the art work in the living room. So, with that, we are finally all moved in. Of course, the house is not sold yet, but I still truly believe GOD will take care of that issue. We have had a lot of people looking at the house and we have been a number of folks second choice. But, in this market, number two is not good enough. We have been getting plenty of exercise with the warmer weather. The canoe has been busy, and the dog is getting tired of walks! He actually laid down during a walk at a local park today, as if to say; "That's it, I've had enough!" My cane is now my constant companion as I see more and more problems keeping my balance. Sometimes, it just feels like the room moved. If we lived in San Diego I would blame earthquakes. It's not a big deal, just an annoyance. Just like so many other parts of my disease. I find that I am mentally, pretty well off in the morning, after I have had a couple cups of coffee and a good while to wake up. I take afternoon naps most of the time, but I still find that my mental ability and my emotional stability seem to go down considerably in the evening. Again, I think that is normal for what I am going through. But it is annoying. My wife continues to try to keep me mentally engaged and is continually looking at my condition from the positive side. That helps me, because all of the "paper cuts" wear on you after a while.

So, while the major stress of the move seems to be past, and we seem to be settled, I find that I have not rebounded to my mental capacity or my physical ability that I had before the move. I guess the neurologist was right. She's good!

Sunday, March 21, 2010

Frustrations...

One of the frustrations I and many other sufferers of neurological disorders have is the up and down progression of our diseases. Whether my final diagnosis is Parkinson's with Dementia, Alzheimer's, or Lewy Body Dementia, is of no matter to me, other that the final diagnosis will help me plan the rest of my useful life and make me aware of new drugs and treatments that are specific to what ever disease I have. But each of these, and it is looking more and more like Lewy Body Dementia, have an up and down progression. That is, you will feel realty good for a period of time and then take a decided down turn and stay at that level until the next shift. Each UP is not as high as the last one but each down is lower than the one before. In the beginning, and trust me, I am still in the first Tri-Mester of this pregnancy, I liked the good times. I enjoyed feeling good and actually questioned if I was sick. I remember once, and only once, I actually convinced my neurologist to let me quit taking my meds. Boy, was that a serious mistake. The symptoms came back with a vengeance. But lately, I have come to truly dislike, and even hate, the good periods. First of all, it raises questions in my Protestant work ethic mind that I am not sick and that I am malingering. Of course, I know that is not true, but my demented mind makes me question my own sanity. Then, the good times only remind me that another down turn is on the way. That has recently happened. I had a pretty good week last week. My balance was good, I was mentally alert, and my depression was for the most part, under control. Then yesterday hit. I had issues with hallucinations, depression, and my balance was way off, to the point that I am back using my cane.

OK, I am whining a little bit. But I think it would be easier if this condition just took a nice, predictable, slow, steady, path into oblivion. Instead, I am up one day and down the next. It drives me crazy. I know that others who suffer from this malaise have the same experiences and I am interested in your prospective and how you and your care giver handle the issues of up and down. I look forward to your insight. Thanks for your support, it really does help!

Friday, March 19, 2010

Spring is Here!

Linda and I have been settling into our new apartment. It has been stressful as I have discussed. The house still has not sold, so that is weighing on my mind, and the prospect of proving that I am sick to another doctor is upsetting to me and my wife. But, Spring has sprung! The weather was great today! No rain, 73 degrees, and we decided not to work on finding a place for everything and go canoeing! We went to a Lake we had not been on called Lake Smith, and it was wonderful. The lake is big, serene, with few power boats and a plethora of wild life to observe. I love to look at turtles and they were out sunning themselves everywhere. The geese were fighting over mating territory and they were fun to watch. We spent over an hour and a half, rowing across this majestic lake. It was relaxing and it recharged our batteries. It was much needed. Yes, I am sore and I will admit, I had problems getting out of the canoe because I locked up. But it was fun! We have to remember that we retired early, to enjoy time together while I am still healthy enough to be fun. Today was a perfect example. Yes, there were things to do at the house and the apartment. But they will wait until the weather is not good enough for canoeing. Today was GOD's gift to us. Thanks Father.

Monday, March 15, 2010

The UVA visit

I told you that I had a consultation with a neurologist at the University of Virginia, ordered/ recommended by my neurologist. Well that visit was today. All the stress of the move, trying to sell our house, retiring, and now this! Linda and I are both JUST recovering from bad colds, but we went, spent the night, and made the appointment at 2:30 PM. I knew this neurologist was also a female, that's OK, no issue for me. But I was expecting someone with some experience, maturity, presence, from a research university medical center. Nope, not this time, in walks a 14 year old, 4'11'' tall, wearing corfam doctor's shoes! I swear!! Not only do I have underwear older that this girl, I was wearing it! Now, I will give her credit, she did spend over an hour with us, but that's because the hands on her Play School Clock don't move on their own! Remember that "Play Doctor" toy kit you got when you were two with the stethoscope that really worked and the little plastic hammer. That's what she was using. I thought the purpose of this visit was to confirm what my, rather seasoned private practitioner of neurology, has observed and tested for over three years. I got the idea she did not believe I was sick, that my symptoms were faked, and I was an overall malingering gold brick. I expected her to call General Patton in to slap me with his gloves!!

OK, now you have the scene cemented in your mind. I swear, this is all true. Now she wants me to drive three hours back to UVA to redo the Cognitive Skills Tests, with her Clinical Psychologist, That should be a trip. How old is this doctor? Will I use a crayon or finger paints to mark the blocks? Will there be a nap time in the middle of the testing? Through all this humor, you may detect some frustration, and that's true. I HATE being treated like I am not sick, and that I am trying to beat the system. In general, I am really pissed off!. But, I will do the tests just to prove my point. This is not turning out anything like I thought it would. More to come.

Thursday, March 11, 2010

The Move, Part III.

Things are starting to come together. We even cooked a meal last night! Yes, we still have a few boxes to unpack, and some art work to hang, but it is really starting to look like home. Marcel, the wonder dog, is doing much better. I think he has figured out this is a "No Bark Zone".

We finished cleaning the house yesterday. It looks fantastic. It is as clean as anyone could possible want. Now all we need is a buyer. The yard sale is Saturday and the open house is Sunday. GOD will surprise us, of this I am sure.

This morning is the first time I have been alone in the apartment. My wife has gone to her Bible Study Fellowship, that meets every Thursday. So I have the run of the place. Well, Marcel and I. I have installed two window valances in the guest room and that's about it. I think I will rest until she comes home.

I have met some very nice folks here, many are retired military. Imagine that, in Tidewater! It is very quiet and the apartments seem to be extremely well sound proofed. I think this is going to be a good home. I have noticed that my mental abilities have taken a measurable decrease. My wife has also noticed. We will see if that is temporary or not. It may be from the stress of the move, but it may plateau at this level also. Only time will tell. I will keep you informed.

This Blog is as therapeutic for me as I hope it is informative to those who read it. I intend to continue this as long as I can. More later.

Monday, March 8, 2010

The Move, Part II.

Well, I promised I would continue to update you on the progress of what I am now calling; "The Last Move!" This is a lot harder and more emotionally draining that I had ever expected. I have been overwhelmed by emotions, doubts of the wisdom of this move, and worry. Depression is my constant companion. I am getting more worn out and more emotional as time wears on. My wife, bless her, is working diligently at making our apartment an orderly home. She is placing everything in a logical location so it will best fit both of us. I am almost unable to help her. We did go back to the house today and start cleaning and packing up most of what is left. I believe one more load in my trusty Subaru Forrester will get it. Doing manual work always helps me when I am overwhelmed. But, my physical limitations make that hard to do. Just the same, WE got plenty done today. I would not be ashamed if someone looked at the house today. We still desperately need a buyer. But I believe that is in GOD'S hands.

As far as my doubts about the wisdom of this move. I discussed this with my wife today and she assured me that this was the RIGHT thing to do at the correct time. SO, since I am not thinking straight, I will defer to her judgment. I told he I was ready to paint the entire house out, inside, replace the carpet, and move back in. She did not agree. Most likely she is right. But the emotional roller coaster that I am on is terrifying.

I am also noticing more weakness in my arms and legs. Friday and Saturday, I felt very good and stronger that I have in a long time. That has passed. My mental alertness is also diminishing. I took a nap this afternoon to try to refresh. It did not work. Both of these symptom swings are common with PD with Dementia and LBD. If I have not mentioned it, I have a consultation at UVA Medical on Monday. My neurologist wants a second opinion. I expect the doctor to tell me I am ugly also. That would be a second opinion!

My little poodle friend, Marcel had a better day, of sorts. The sonic bark controller did not work, so, I purchased one of those collars that shock the dog when he barks. He has finally agreed to reduce his barking when we are both gone. We were able to go shopping for a hour today and when we returned, he was quiet and calm. We immediately took the collar off, praised him for being a good boy and I took him for a long walk. Hopefully positive reinforcement for his good behavior will also hep him control his barking and whining for me when I am gone. I realize it is annoying for the neighbors. But they need to let him get acclimated also.

That's the update for now. More later.

Sunday, March 7, 2010

The Move!

Well, All of our possessions are in one place! It took six days, and the help of some very dedicated friends from our Church, my Search Radar Branch team, and my best friend Jerry and his family. But we made it. We finally got to, actually found our bed, at 11PM last night. Then, our 18 year old cat decided to spend the night telling us she did not appreciate our moving without her permission. My mistake! Now we are in the "Where does this go?" mode. Most things fit, some will go in the yard sale, others to charity. Of course, our rule has always been, friends have first selection. This has been a far more traumatic and mentally draining move that I could have imagined. It used to be, we could do this move in one day, unpack the next, and be ready to go to work. Now, I am too tired to do anything and my wife is working double time! She is a wonderful wife, friend, and love. I hope she keeps me. My Neurologist was right when she told Linda and I to make this move now! I do not know how we could have done this with me in any worse condition. But, GOD was gracious, and HIS timing is always right. It certainly was this time.

Then there is the problem of my dear friend, Marcel the miniature poodle. He likes to be with me, all the time. In our house, I did not know if he barked and whined when both of us were gone or not. But a neighbor has already let me know that Marcel whines and barks when I am gone. I am hoping that it is the new environment and he will stop, soon. I also bought one of those sonic "Dog Bark" training devices. The dog next door stopped barking, but Marcel still seems to get his two cents in when someone knocks at the door. We will see if Marcel or the Neighbor get trained. I would HATE to have to find him a new home. I really love that little dog. But, we are not moving again.

I promise to expand on the experiences of this move when my energy levels increase. Thanks for your prayers ans support.

Tuesday, February 16, 2010

Emotions...

Remember being 14, and being in LOVE with that cute girl, but she does not even notice you. You are heart broken, confused, angry, sad, hurt, and you are SURE, nobody in the history of the world has ever felt that way before! All of us have had that experience, hundreds of times in our lives. We could not talk to Mom or Dad. Our older siblings teased us, our friends used our problems against us. We were ALONE in the world! No one to help us. They couldn't help because they could not possibly understand what I am going through! Well, that explains the emotions that have gone through over the past two years since being diagnosed with Parkinson's and Dementia. Not all the time, but on those quiet evenings, alone in my thoughts, or when I awake before my wife, I thought, everyone tried to understand, but they can't.

Well, I am here to tell you, I was wrong. Each of you who read my Blog, interface with me everyday, put up with my insecurities and moodiness, and love me, really DO understand what I am going through! I am NOT alone! I have found that many of my friends and many wonderful people that I have never personally met but who read this Blog, do care about me and do understand my illness, my emotions, and my fears! I have learned that many of you have done research on PD and Dementia, not to expand your knowledge base, but to help me! I was wrong!!! I am not alone!!! I have never been alone! I have never been so glad, so happy, so blessed to be wrong in my life!!

So, first of all, let me apologize for being SO wrong. Second, let me thank each of you for being the best friends, the best support group, the best family, anyone could have. God has blessed me and I know that there is nothing that can defeat us. I am strong, capable, happily looking forward, to the future because of the support each of you give me. I realized this tonight, after discussing a number of things with my wife, that happened today as I visited the folks at work. It was reinforced after my best friend, who himself is going through some serious health issues, called me to discuss helping with our move. It was solidified when I realized how wonderful, responsible, and loving my son is and how worried he is about my well being. With a support group like this one, I am Superman!

So, while I realize there will be tough days, days of depression, and issues, (remember, I am a realist) I can still depend on each of you for support because you DO know what I am going through and moreover, you DO care! Wow!! Thanks, I love each one of you! God Bless each of you.

Sunday, February 14, 2010

The consequences of life's decisions!

The packing has begun! In our many moves, most of them since I retired from the Navy, and most of them for reasons I now don't remember, my wife has always packed our china first. I remember proudly buying that Nortake China set on my first WESTPAC cruise. As it turns out, it is a limited edition set, only made for military export. But it is precious because it was the first thing I bought for our life together. You will remember we got married and I deployed to Viet Nam almost immediately. My wife lived in a furnished apartment in Whittier California while she completed her Bachelor's Degree at BIOLA college. (Now BIOLA University) In any case, the china represents us together, and it is cherished by both of us. My wife always packs our china and takes loving care in protecting each piece. But the packing of the china signifies the beginning of the move! It is like the lighting of the Olympic flame at the beginning of the Olympiad. So, while we don't take possession of our new apartment until March 1, the move has officially begun.


While both of us are excited about moving into our new apartment, a place more suited for my issues, I can't help but have some reservations and depression about this move. This move, is probably the last move we will make willingly. All of our moves, even my Navy moves, we had a hand in the decision making. I negotiated orders when I was in the Navy, trying to get the right jobs to help me promote while having some fun along the way. After we retired from the Navy, we moved from house to house, looking for better neighborhoods, schools, locations closer to our Son and his family, or what ever whim happened to move me. My wife always has taken my wanderlust with a remarkable measure of calm and composure. I am sure that she would have been happy to stay in any one of our homes. After all, they were all nice, comfortable, secure, safe, and located in a good neighborhood with all the modern conveniences. But I have dragged my wife all over the Tidewater area in the last 27 years. We have lived in Virginia Beach, Chesapeake, (three places) Norfolk, and back to Virginia Beach. The china has been packed up more times than I care to count. But she never complains. She is truly amazing and frankly, I owe her an apology for making all of these moves.

But, like I said, this is most likely the last move I will orchestrate and I am sad. Sad, because I caused her to move so many times, for no good reasons. And sad, because I know where this all leads. Yes, this is a good move for all the best reasons. Heck, I get tired starting the lawn mower, well enough mowing the lawn. Yesterday, I used my drill to tighten some screws on the dinning room chairs, and I broke a sweat! No, moving to a home where I do not have to do the maintenance is the RIGHT move. Me on a ladder makes no sense at all. I am dangerous in the attic!! But, I also know what the next move holds. No body looks forward to deteriorating mentally or physically, and I am doing both! We ignore the fact of our own demise throughout most of our lives. Some of us get plastic surgery, Botox, VIAGRA, We have LASIK surgery so we don't have to wear glasses, die our hair, and have Liposuction. But sooner or later, our deteriorating body catches up with us. Mine has just become a reality earlier than most. As a friend of mine says, "It is what it is."

So, as we pack, move, and unpack, don't be too surprised if I am a little misty, sad, moody, or depressed. I believe GOD still has some things for me to do, but I know the time I have to accomplish that list is getting very short and my abilities are beginning to wane. I wish I could remember exactly how President Regan said it, when he wrote his letter to America, explaining his Alzheimer's. He was so eloquent and uplifting. But the basis of his letter was, he was on a slow journey into the unknown, and so am I.

Saturday, February 6, 2010

Life's decisions.

My wife and I, along with my son and his wonderful wife, have been able to make some life's decisions concerning where my wife and I will live. I know, at least I think I know, that I have addressed in the past, our desire to make our lives simpler. Get rid of home ownership responsibilities for me and my wife. We discussed this with my neurologist during my January visit and she agreed that NOW was the time to make the move. Why, because I need to get used to where I am, I need routine, and as my Dementia progresses, the unknown will be even harder to deal with. We also discussed this with an "Elder Law Attorney and he agreed with our reasoning. In any case, there is this new construction "over 55" complex that we have had our eyes on. But, we were having difficulty making the final decision. One day last week, we were out and about, and we visited another apartment complex, that is not "Over 55" that is close to the beach. I will admit, the complex is beautiful, wonderfully maintained, and equipped with all the class "A" amenities. But, it was not "Over 55" and did not have the handicap access I knew I needed. Just the same, we liked them. So, I asked my wife if we could revisit the community we liked. She agreed and we quickly drove over to them. We have been looking at these places so long that the staff knows us by name. It just so happened that they had only one apartment left un-leased and it was the model we loved. We took a tour of it and decided to sign the lease on the spot! We move in March! This apartment has every item on our list including grab bars in the bathrooms, showers and bathtub. We came home, called our realtor, and put the house on the market in the middle of the worst snow storm for our area in 20 years. We have had three different people look,, and I know someone will buy our home, because it is a great home in a wonderful neighborhood, and mostly because I believe GOD has directed our steps. So, the decision has been made, and soon, the next chapter of our life will unfold. GOD is good!! I am happy.

Monday, January 25, 2010

I don't know what's happening, but its' happening fast!

In the Navy, I knew a fellow Gunner's Mate who had a quip for everything. He could make me laugh at the drop of a hat, and when things were going wrong, quickly, he used to say; "I don't know what's happening, but its' happening fast!" Well, in the last few weeks, that seems to be where I am with my PD and Dementia. I have already told you about my recent issue, living out my dreams. The pills the Neurologist gave me seem to be helping and my wife is getting used to sleeping with her catcher's mask on. Now, I am having problems figuring our where I am, especially at night. We went to bed last night, all tucked in, my wife had her catcher's mask on, and I was just drifting off to sleep when I was overwhelmed with the feeling that I did not know where I was. My wife was almost asleep and I woke her to ask, where are we? Are we home? I truly did not know. It is a frightening feeling. She assured me that we were safe, at home, in our bed, and I went back to sleep. But this is a new development and one that I intend to monitor. I suppose my wife is also!

Additionally, I spend more and more time, thinking about the past, old shipmates, old stories. The Internet is not my friend here, because I can search and find old friends, or more depressing, their obituaries. Its' not that we don't get out, my wife makes sure that we go somewhere and interact with people everyday. We go to the recreational center three days a week and get a vigorous physical workout. It's those down times, that my mind slips back to the past and I am in my own world. It's not frightening, just detached. Actually, I am more comfortable there sometimes, not always. Oh, well, I am sure other have had these issues before. And I am not complaining, just keeping you informed. Again, being able to discuss changes helps me deal with them. Any feedback from anyone, I would really appreciate it.

Monday, January 18, 2010

Reader comments, an encouragement.

Recently, I have received some very nice, and very encouraging emails from some of you who take your busy time to read my blog. I truly appreciate getting feedback from those of you who are having the same experiences that I am. Some of you are farther down the path than I, and I appreciate the insight. I pray that I give someone that insight also.

Now that we are retired, life is slower, less complicated, and allows time for reflection on my situation and its' consequences. I am enjoying the slower pace. I enjoy my naps! Naps are a good thing! However, the time to reflect has brought issues that I had not expected. For instance, today was the first time my wife has said, she was worried about my Parkinson's and dementia. Up to now, she has been stoic, tough, almost in denial. This openness may have come from me punching her the other night. (Read my last post. I am not a wife beater.) Or, it could come from a more recent event. A couple of days ago, I don't remember how far back, but recently, were at the Credit Union and I was paying a bill. I had to sign the electronic pad to authorize the transaction, and I forgot how to write my signature. I may have forgotten exactly who I was, I really don't know. All I know is, I was blank! My loving wife coached me into signing something that looked like my name, and we went on our way. But it was disturbing.

As I said, I have had time to reflect on what I have, and where things are going. For the first time, I can really say I am frightened. The unknown is always unnerving, but this is different. The first time I went out of a helicopter on a half inch wire, 250 feet above a pitching Navy ship, I was frightened. But, I knew others had done it and survived. I also knew someone who did not survive. But I realized that once I did it, the fear would be gone. However, with PD and Dementia, I will never reach the point of familiarity. I will only reach the point of no return. And that is what has me frightened. I told myself yesterday; "This is NOT how I want to die!" In my Navy career, I did crazy, dangerous, even foolish things, in combat and on liberty. If I would have been killed in any one of those situations, I would have had no regrets. I have always been a man of action. As a Gunner's Mate, I always took charge, especially in emergencies. It is how GOD made me. But now, all I can do is wait. I can't charge out and confront the situation. I can't solve the impossible equipment failure, I can't keep the unhappy sailor from committing suicide. All I can do is wait for this disease to progress. Yes, I can be proactive and exercise, take my meds, keep my medical appointments, be open with my wife and doctors about my symptoms, and I am doing all of that. But to no avail. I still get worse, I still am depressed, and I am still a worry to those who love me. Again, I realize GOD has a plan for me, and I have no intentions of taking matters into my own hands. I am sure that others who have been in my place have had much the same emotions. I am only expressing them for my own well being. You see, one thing I have learned, getting things in the open is better than keeping them bottled up inside. Sometime you, I, can't tell everyone exactly what is on our mind or in our heart, but this blog let's me express my emotions when they are fresh and poignant. Thanks for your concerns and encouragement.

Wednesday, January 6, 2010

New issues

I know I have been remiss in writing lately. Over Christmas, my son and his family came to visit and spent 8 wonderful days with us. Yes, there is stress with company. But my wife and i love to have them here. I had some issues with emotions and routine, butt they were manageable. Now, my wife and I are settling into retirement. This could be good!

Now on to the new issue. I have told you that my dreams are very vivid and very real to me. In recent times, I have had difficulty separating my dreams from reality, after I wake up. This can be frustrating when I spend a major portion of a day trying to remember what I was supposed to do. Generally, I have this feeling of of the task having great importance. Normally, at some time during the morning, I remember that it was in my dream and not a real issue that requires my attention. Also, I have had issues when I dream of someone who I want to contact. I wake up in the morning, determined that I will contact that person, only to realize later that they are deceased. Naturally. this is very disconcerting to me. But now, I have a new issue to deal with. Or should I say, my wife and I have a new issue to deal with. Last night, I was having a very vivid dream where I was in a fight, and being restrained. I broke free and I HIT the bad person in my dream! Good you say, not really, because I PUNCHED my wife in the head!! Now, I am not as strong as I used to be, but I hit her hard, just the same. As she cried out, I awoke and realized what I had done. Naturally, I was crushed that I hurt my wife. But I was more concerned since this had happened once before. That time, I was dreaming that I was in a fight and I reached out and grabbed the hair of the bad guy. You got it, I grabbed my wife's beautiful long hair and gave it a strong pull! This is not good.

Today, as it happens, I had an appointment with my neurologist. My wife and I described these events to her. The doctor explained that when people are dreaming, they are in REM sleep and they are actually paralyzed, so they cannot act out their dreams. This makes sense if you remember a particularly scary dream that you had and you could not move. In any case, because of my dementia, the part of my brain that paralyzes me during REM sleep is breaking down, and I CAN act out my dreams! This is a real issue, because it is not going to go away, it is going to get worse. The doctor prescribed a drug to take at bedtime that may help with this. She also recommended we sleep in different rooms! Both my wife and I are not in favor of that, at least at this time. But, she cannot continue to be battered in her sleep. That is not fair. So, we will see how this new medicine works. I always knew the dementia and Parkinson's wold progress, but I never knew I would become a threat to my wife's well being.