My name is Randy Conn. I was diagnosed with dementia with Lewy Bodies just over one year ago but I knew in my soul that I suffered from this condition for much longer. I was well aware of the signs and symptoms of LBD because both my parents died from complications of LBD. One was diagnosed with dementia with Lewy Bodies and the other with Lewy Body Dementia but the diagnosis makes little difference. By the time they had reached the moderate-late stage there were few differences in their conditions so basically the diagnosis became a matter of semantics.
It may seem strange but I consider myself lucky in that I did have an intimate knowledge of LBD and therefore was able to point my physicians in the appropriate direction and probably saved myself years in the diagnosis. Years of possibly taking the wrong medications, medications that most likely would have done more harm than good. It saved a lot of unnecessary testing for other possible conditions. I’m lucky because the average patient doesn’t have this knowledge and the average physician doesn’t think LBD on a regular basis. They just don’t understand it, there isn’t a lot of information out there about it and there are no diagnostic tests for it. If I’m not mistaken, it wasn’t even taught in med school until the early to late 90’s. So if your physician is a bit older and hasn’t had the appropriate CE course, they may know nothing about it.
I met Jeff, the other nut who runs this blog, while futilely searching for information about LBD on another dementia site. It wasn’t even solely devoted to LBD, that’s how difficult information is to come by, you often have to search generic dementia information sites. Anywho, we instantly bonded as kindred spirits. Although we have never met in person, it feels as though we are old friends and have known each other all our lives. He is approximately 1 year ahead of me in this journey so I am constantly getting a preview of things to come so to speak. It is amazing how similar the course of our diseases are running. And it’s amazing how therapeutic it is to have someone going through the same things to discuss all of the weirdness with. “Normals”, as we often call those of you without dementia, just can’t understand what’s going on in our warped little brains. We barely understand. Truth is we really don’t either, we’re just closer to the situation.
Both of us like to post about our day to day struggles/adventures/misadventures with this ugly monster that walks in the dark recesses of our minds. We will be as honest with you as we possibly can be. But please be advised that you are dealing with folks with a diseased mind. So that everything we state with a grain of salt, do your research, and use your best judgement. We can and do make mistakes. Not intentionally, but we do. As for why we post, I can’t speak for Jeff, but for me, I want to leave some type of record of the progression of at least one patient’s journey with LBD from that patient’s view. Because of expressive aphasia, I have a difficult time expressing my feelings to my family but I can still, with effort, put my feelings, needs, pains, joys, etc... in writing so as to better keep us close. To let them know where I’m coming from and what’s going on in my scrambled mind. Also, I hope to give the caregivers out there a better understanding of the life the loved one is leading. As a caregiver, it becomes easy to believe you understand what the demented person is going through and to make many erroneous assumptions. I know I did while caring for my parents. This horrible dark walk just can’t be understood completely until you place those shoes on your own feet and walk the path for yourself. Education from the source is golden.
One other thing before I go for today. Jeff and I are both very open. If you have a question, personal or embarrassing, silly or serious, if we have an adequate answer we will provide it. If not, we will try to point you in the correct direction to find the answer you need. We won’t lie to you. We won’t make up bull just to puff our chests or make you feel better. No sugar coating. But again, remember, our minds aren’t well. So be cautious of everything we say. To finish this, my first post off, I just want to say welcome and I’m sorry you found yourself in the situation that you found it necessary to seek out such a site. Til next time.