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Lewy Body Dementia is a slowly progressing disease. I’m told it affects at least a million people, or a little more than twice the number that have died from Covid-19 in the United States. Once symptoms are correctly diagnosed in Lewy Body, a person can last 5-8 years before death. At the appointment where I was given my diagnosis I was told I had three months to three years to live and that I should “get my affairs in order.” I had other things going on my neurologist didn’t realize. Lewy Body isn’t easy to diagnose because some of the symptoms are very Parkinson’s or Alzheimer’s Disease. Here are the general stages of progression for Lewy Body Dementia.
Hallucinations happen over and over for Lewy Body patients. We sometimes see things that aren’t there and at different times we may even be hearing and smelling things. Sleep disruptions happen because we act out dreams while we are sleeping.
The first thing my wife noticed was that I was running while I slept. Just like restless leg syndrome, the movement was uncontrollable and very animated. She said it was just like I was running.
Secondly, I kept seeing a black bear in our yard. Hallucinations are common. We live in the woods and did have a black bear in our yard once. We have pictures to prove it! I saw this bear over and over coming out of the section of woods that runs along our driveway. If I was outside I usually ran into the garage and closed the doors, but one time I got my phone out to take a picture and tried to chase it down. It was never there except for the first time.
Another incident that falls under the sleep disruption happened one night about a year ago. I was dreaming and being chased by a pack of coyotes and they caught up to me. They started biting me on the arms and legs. I decided to fight back. I started punching, kicking and yelling until my wife woke me up. I am not proud of this, but I was punching her and screaming at her.
There are other stories, but so far they all involve animals. For an instant I always wonder if they are real, but I haven’t hallucinated a lot since my neurologist started treating my with a drug called Donepezil. It has been a wonder for me.
When I moved into the middle stages, movements like Parkinson’s Disease started to happen. I occasionally had rigid muscles, tremors, and difficulty moving generally. I had rigid muscles, tremors in the body, falls, and impaired speech. My thinking was impaired. I had memory loss, a short attention span, long periods of looking at nothing, confusion, and visual-spatial problems like in some patients that have Alzheimer’s Disease.
One thing that happened to me that doesn’t happen very much at all was many of my symptoms turned out to be from another neurological disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Many of the symptoms I was having were attributed to CIDP and that was a relief. It means I am not as far along in Lewy Body as we thought I was. I have been treating two days every three weeks at Mayo Clinic for IVIG therapy. It’s administered like chemotherapy, but the drugs are not debilitating at all.
Depression. I already have periods of depression, but they are not as bad as I am told they it will be in the late stage. The slow deterioration of the functions of the Autonomic Nervous System will happen. A feeling of Apathy or loss of interest in things or lack of emotion will happen.
And so will end the story.