I feel that I make a great many posts that may seem to you, the non DLB patient, to be pointless or maybe just the ramblings of an unhealthy mind. But I assure you they are not. So I believe that I owe you some type of explanation as to why these often long, rambling posts show up.
There are many reasons for my posts but two primary ones stand out in my mind.
1st: They serve as an informal timeline of the progression of my journey into this darkness for me and mine. One that I can't misplace or forget what it is and destroy. You may ask, why not have someone close to me record my milestones and debilities for me. Because no matter how much they care or try, they are not riding this roller coaster and therefore can't give a true firsthand accounting of what happened. And no matter how hard I try, I can't accurately articulate the emotions and reactions to them. Especially as my disease escalates. Even now as I write this, I'm struggling to find the words to make sense of what I'm trying to say and fear it is making no sense whatsoever.
2nd: (Whew! Drew a blank there for a while but finally remembered 2nd) What information that has been published about DLB has been primarily from the caregivers perspective and to help them cope with us and handle us. Little is written from the patient's point of view leaving the caregiver to guess at best as to what is going on in our whacky minds. I hope to give you, the reader, some insight as to what it's like to be riding in our seats, first hand, as best I can. I want you to know that often it's a fun place to be, sometimes scary, others lonely. And sometimes I am just plain apathetic about the world. Nothing's wrong, I'm not angry at you, I'm not depressed or going woe is me. I don't want to hurt myself. I think that parts of my dementia have taken me away from the world for a long enough period of time that I just withdraw in order to find it within myself to reset. To you guys it may seem as though my world is coming to an end.
There are many other things I want you to know and I am sure I will get to them in one of my upcoming long, pointless, rambling posts. Buts that's for another day...