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.