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.