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?


  1. Don,
    My grandfather was just diagnosed with LBD. We do not know exactly how long he has had it, but he has exhibited signs of memory loss, or forgetfulness. I'm curious to know how it goes with you these days?

  2. My father was just diagnosed with Lewy Body Dementia and Parkinson's Plus. He is a great man, very intelligent, he was a firefighter, a hero to others and always my personal hero. I'm so saddened to think that my father who has always been so proud of his intelligence no has trouble remembering discussions we just had five minutes ago. It's breaking my heart to see him go through this. I'm praying that God allows him to be the exception to the rule and live at least 20 more years. I can't imagine my life without my hero around. God bless all the people who have Lewy Body Dimentia and God bless their families.

  3. Suffering from a long term disease and can't find a real solution for the disease by using pills or medicines just try some Home Remedies for that disease. Home remedies are the best way to get rid of any disease. Becausue home remedies have no side effects and you can take them regularly and treat the disease permanently.

  4. my husband was just diagnosed with LBD. so many questions ans so scared

  5. My friend went on for 10 years, the end has been quick though. Last year was extreme hillusinations and delusions with bad choices and an unsteady gait. Quit walking over night with no clues, quit swallowing 3 weeks later, passing any day.