Saturday evening October 18, 2008

Cunning, sly, subtle, shifty, mystifying, perplexing and controlling. It’s crazy. If I don’t understand all this crap happening to me, then how in the heck can anyone else understand it? Lewy, (sarcastically calling LBD by the name of “Lewy”) these rapid fluctuations that you do in my body make me angry, feel crazy and confused. Sometimes I just think it’s psychological. How can I feel so bad for some days and then feel great on other days?? If I feel crazy sometimes, then other people must really think that I’m nuts! But what about the abnormal SPECT scan? What about all those symptoms which I have? This is so similar to the ups and downs of bipolar disorder. But that is something that seems to be more acceptable and that can be understood. None of us really do understand this damned disease of having Lewy Bodies. Do I scream, shout, cry or just try to sit and to process it….to try to analyze it, to try to make sense of it? I don’t know. I really don’t. So I’ll just deal with the uncertainty just for today. Maybe something will ‘click’ and make more sense to me some other day. Maybe these smart researchers will come up with some sensible and obvious answers. Until then……..”The Lord is my Shepard.” I’ll watch Sara Palin and Tina Fey on Saturday Night Live tonight. I’m sure that will distract me from my obsessions….at least for the rest of today.


Today, I feel very well…….sharp, alert and rested. At least that’s how it seems. No shaking today. What a relief. Just a nice relaxing sunny autumn day here today. Lately I haven’t had those awful vivid, nasty nightmares where I’m always fighting someone away or defending powerful attacks from someone or something. Those nightmares where I kick and hit and jerk around. When I hit Pam in bed which then awakens both of us. And then how bad I feel for hitting her even though accidentally. It’s happened for so many years that I really thought I had some kind of chronic unresolved anger (that’s a psychiatrist for you). But I couldn’t seem to figure out what I’d be so angry about. And the tremors on and off for years. Just must be more anxious that I thought. The off and on fatigue and sleepy spells. The subtle changes in my balance. I used to tell myself I just was getting old and that it was normal to have changes in balance). The difficulty focusing and losing attention over the years. And then the days when I felt really smart, alert, focused and intelligent! How could these opposite things have happened? They still happen but the bad dreams are almost all gone since I started the Aricept. And now the Namenda seems to have made them go away.


Compare this to last night at bingo. Shaking, walking strangely……..standing up and almost shuffling to get started and then walking OK with some imbalance here and there. Walking past the people at the table………embarrassed and self-conscious. David…….you did get through the night. Remember when you grew up hearing those preachers say that you’d go to hell for a lot of sins including playing bingo. Yea, I really did believe that and in spite of not believing it now, I can’t forget hearing it. Just a shade of guilt that I now can rationalize by telling myself that bingo is good for developing visuospatial skills (which it really is).


Enough already………………….




3 Responses

  1. David, hearing what you describe, what you share from someone with LBD is so much more pertinent and meaningful than the conclusions we as caregivers form. Thank you, thank you for your willingness to take us on this roller coaster ride in your car for a change, instead of in an adjacent one.

  2. I am printing up some of your writings to take with me to Boston where I am speaking as a Lewycaregiver at MIND’s Symposium. If you have any objections, please let me know. It is essential for potential donors to hear about LBD from the inside out..Marjorie Carmen/The Carmen Foundation

  3. Marjorie………..Please feel free to print out whatever you would like. It it’s a way of helping and educating others, then by all means do it!


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