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.