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!

3 comments:

  1. Next time you are in one of your up phases, give me a call and I will whine like only I can - that will remove any pleasantness!!!

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  2. Hi. I am my mom's care giver. I believe that it's LBD.

    I've noticed that the foods she eats can trigger hallucinations. I started to track her blood sugar readings with what she ate and her hallucinations.

    What I've observed is when her blood glucose is above 125, she will hallucinate. If she eats sugar or any simple carb (like crackers or anything with wheat gluten) she will hallucinate about scary stuff. She declined really fast and her lows and highs were as you described in this post.

    What I am noticing now is that with the change in diet, my mom's hallucinations are minimal and the ones she does have are not scary. She sees my dad who passed 30 years ago and is giddy like a school girl.

    I am a trained clinical hypnotherapist and have made my mom a meditation recording designed especially for her. It helps her to relax and the subliminal messages give her confidence in herself. It's a way for my mom to meditate.

    I'd start by cutting out all processed foods and anything in a box. Eat more fresh fruits and vegetables. Broccolli, cauliflower, brussel sprouts and asparagus appear to help my mom. Asparagus lowers blood sugar naturally. Eat yams instead of white potato.

    Do what you can to cut out white foods and eat more grains like quinoa.

    Dr. La Puma, Chef MD has good recipes to get your on the right path.

    You can do it... you CAN have more good days than bad ones.

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  3. I believe diet is important for any disease - its something we do have control over. I'm sure that one of the main reasons Lou does so well day to day is because he eats very well (most of the time!)

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