I have read numerous posts on the LBDA.org blog about their difficulty finding a Neurologist that actually understands Lewy Body Dementia, well enough treat the individual with LBD. I have had my own issues with neurologists. Today, I did a search for the Gulf Coast and found few neurologists that state that they deal with dementia patients, well enough LBD.
The fact is, many neurologists try to tell us we have something other than LBD. Strokes, Parkinson's, Depression, or other diseases, are the favorite diagnosis. Then when we aren ourselves with knowledge, the doctors get angry and tell us to go away.
Lewy Body Dementia is either the second or third most diagnosed dementia. And, recent medical discoveries are connecting Lewy Bodies to Parkinson's and Alzheimer's! If that bears out, LBD is the MAIN case of all dementia's and movement disorders!!
It is a shame, be we in the LBD community must be pro-active. We must do research on this disease and keep a log of the symptoms our loved ones are experiencing. What we do may help medical science and it will certainly help our loved ones.
I also read a study that stated that individuals with autonomic function failures have a high risk of early death. The fluctuations in Blood Pressure, constipation, dizziness, all are functions that are negatively impacted by the Lewy Bodies impacting the Autonomic functions of the brain. I wonder him many neurologists have read that study. I intend to take a copy to my neurologist to educate him!
Keep reading the LBDA web site. Keep looking for new studies. Knowledge is our best weapon against Lewy Body Dementia.