Reasons for my posts

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...


8 Replies

  • Randy -- I appreciate your letting us in to your world.

  • Appreciate the explanation and the reasons for posting. I believe your posts are important both for yourself as you have described and for educational purposes - helping others, like me, to understand your journey.

  • Your post explain it exactly There not rambling to me It's so hard to get a grasp on lbd because it feels like you here yet your not I get vivid nightmares and then I'm so anxious all day It's. very hard to express yourself in words its like you just have emotions but the thoughts to express them aren't there

  • Yes. Exactly.

  • As someone who loves and cares for a patient with AD I fully appreciate the insight. As I watch him I am often wondering what he is thinking about and how this disease is impacting HIM. Your posts help me see this from his perspective. Thank you.

  • Randy,

    Yes, I understand and appreciate the intent of your posts, which serve as valuable guideposts for other members of this community.

    I have created the topic "DLB: Lewy Body" so you can tag new posts going forward.

    All the best, Christian

  • Thanks Christian, I appreciate that. There aren't a whole lot of active places out there that cater to us DLB folk. I ve been active in several, and still am in a couple, but several have seemed to slowly die out.


  • Randy- your posts are most helpful as I watch my mother progress with this disease and wonder what else is going to happen next. Thank you and god bless.

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