Lewy Body Dementia is the second most prevalent form of Dementia following Alzheimer's. Yet few Doctors know much about it and the public is all but ignorant of the disease. I have an acquaintance at the local recreation center that had been diagnosed with Parkinson's. He does have some of the Parkinson's symptoms, but not the shaking. But his short term memory os nonexistent. I just heard that he finally has a confirmed diagnosis of LBD. I am happy the neurologist finally came to a decision.
In this gentleman's case, the neurologist has not prescribed the most effective Alzheimer's drugs and therefore, he has not experienced the benefits that I have. Maybe now, he will start taking Arecept and Namenda and I hope they at least slow his mental decline.
Getting an accurate diagnosis is required to receive the correct medicines. But it is even more important than that. With an accurate diagnosis, you are first in line for new medicines that are compounded to help your specific condition. Treating someone with LBD with the standard Parkinson's drugs is useless. For instance, Sinemet does not work for the rigidity and instability caused by LBD. Yet, neurologists constantly give those drugs to us! I am lucky that my neurologist here in Florida realized that. Now, my stomach is not upset all the time! But I spent a long time with the dry heaves from Sinemet!
I have been blessed in my LBD journey because I had neurologists in Virginia and here in Florida that actually understood LBD. But I have also had a couple of neurologists that found not even spell Lewy Body Dementia!! It is terribly frustrating to have something wrong that your Doctor can not understand, well enough diagnose. Again, I am glad this gentleman has finally received a definitive diagnosis. But LBD is a difficult diseases because of it's ups and downs. One day you feel pretty good and the next day, you are worse than you ever have been. At least, with an accurate diagnosis, we can get the best treatment for our disease.
Thank you Silverfox for this great blog post!