I was doing some research on the Autonomic issues caused by LBD. I have had and written about a number of these problems that I have encountered in increasing amounts. Inability to control body temperature, urinary and bowel issues, and even vision issues. But, today I learned about two that I did not know about. First one is irregular heart beat. Now, I was diagnosed with that a while ago, but was that caused by the LBD or a heart issue? I cannot say. Then there is the fainting! I have had issues with the room spinning, getting dark, and me passing out or almost passing out, ever since the beginning of this disease. Now I learn it may be caused by my Autonomic system not being able to control my Blood Pressure! It is already documented that my BP is erratic. But now I know, or at least strongly believe, that this is caused by LBD!
These are important symptoms to understand. They also let me know what parts of my brain the Lewy Bodies have effected. But it also causes me concern. I have passed out and get very light headed very often. What is that going to become? And, during my recent hernia surgery, the doctor asked me when I woke up; Do you have an irregular heart beat? Obviously I do and now I know why.
As a person with LBD, I have found out that the research into what this disease causes and effects is up to me!! Most doctors, including neurologists, can't even spell Lewy Body Dementia! It's true, I have had to spell it for doctors before!! So, discovery is up to me. Which means, it is up to YOU if you are a caregiver or person with LBD.
This truth is sad, if you think about it. But it is the TRUTH! So, arm yourself with reliable information before you see your doctor or have to go to the Emergency Room. It may save your life!