Hello my name is Brian Dougherty, go by Doc most of the time. I have a friend who travels with me everywhere I go. His name is Lewy Body Dementia. Sometimes the travels are fine, like any other journey, there are a few bumps in the road but otherwise good. Then there are other days when Lewy Body takes over and the Brian Doc everyone knows is a totally different person. And just for fun Lewy can hijack a good day and turn it into a totally screwed up day.
Most of us who have LBD just call the disease Lewy, like Screwy Lewy. Some of the symptoms include, hallucinations, REM sleep disorder, I either get to beat my wife up or fall out of bed, Changes in sleep pattern, I am up until 3am even with taking sleep aids, extreme dizziness, falling usually on stairs and the latest is rigidity in my bones. There is probably a few I forgot, oops there is another one, forgetfulness at times. Thoughts often have trouble making it to my mouth to get out, sometimes a very good thing.
This blog will hopefully help some people, or at least let them know they are not alone. Tonight I just want to introduce myself let you know about my diagnosis and get the ball rolling to the weekly updates.
My diagnosis was confirmed in November of 2018. It was a long, strange trip but it also brought some peace to my wife, Amy’s, and my life. The trip started with a stop at a neurologist who really only did insurance claims. His physician assistant gave us direction to our next stop, a geriatric neurologist. The PA did do some testing and gave us early indications as to what we may be facing. The geriatric neurologist did some more testing and actually brought another Dr in to consult. They talked and came to the same conclusion as the first doctor’s PA. That there was Lewy Body Dementia in me. They gave me this wonderful news and the even better news that there is no cure and life expectancy usually is 7-10 years. So being the stubborn Irishman that I am, we went to see a third doctor, a neurologist who specializes in dementia, for another opinion. Unfortunately, the diagnosis was confirmed. I was told to stop working. I asked why and the Dr told me that the proteins that are the Lewy Bodies the disease is named for. These proteins affect brain function, especially Dopamine and the Autonomic functions. The autonomic functions cover anything from your bowels and urinary tract, blood flow and other areas. The Lewy Bodies slowly take away a person’s, mine, ability to do basic tasks.
My life is truly a roller coaster. Two days are never the same. Sometimes morning is different from afternoon. On this note, there is one other symptom that I have, periods of absence. I am sitting there and it is just my body, the rest of me is someplace else. I am not mentally in my body. It takes my wife a few slaps to my face to bring me back. I have no recollection of anything happening and am very disoriented. This disease progresses slowly and is also part of the Parkinson’s family and I get to enjoy all of the shakes as well.
This blog will be updated weekly. If anyone has any questions please leave a comment and I will respond as soon as possible. I joke about this to get by. It is my defense mechanism. It is very serious. Robin Williams had this and it is why he committed suicide. There is a documentary called Robin’s Wish produced by his wife.
Lastly for tonight, most primary doctors have very little experience with this disease. It is the 2nd most common form of dementia with 1.4 million cases in the U.S. Yet family doctors have little info about it. If I can help someone, even one person, it will be worth it. It will also help me by having a journal of things for my Dr appointments. I will be back next Tuesday with updates and every week after that. I hope you enjoy the ride along my Travels with Lewy.