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!

1 comment:

  1. Hi, (Sorry I couldn't find your name anywhere)
    Thanks for your candid metaphor describing the outcome of FTD. I wanted to pass along a little hope for a good quality of life.
    My husband was diagnosed almost 4 years ago (age 57) and he was declining rapidly, but for some reason has stabilized and is doing very well. I believe there are many reasons and I wanted to pass along some of what has been helping both of us. Exercising daily (golfing covers exercise and socializing--congrats), socializing, drinking water (reduces headaches), hobby (has traded duck carving for wildlife jigsaw puzzles), purpose to his day (has chores which change as he changes), variety (takes different trails for biking, walking, takes the bus for longer trips, we plan different outings), my attitude and health (meditating, exercise, nutrition, friends, personal growth courses, books, alone time, accepting what is, genuine patience without judgment--not always easy), regular sleep and nap times, accepting what is and doing the best he can every day, and...living and enjoying what we have today because no one is guaranteed of tomorrow.
    Keep up your good attitude and have a great golf game on Thursday!

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