The Beginning

In four days, I go to get a second opinion of whether I have Lewy Body Disease or not. What a funny spot to be in. Hoping it is so it can explain what has been going on these past few years, and hoping it is not because I don't want to go through what can happen in the coming years. And yet, here I sit, worried about both outcomes and wanting neither.

So many emotions in just the past 4 months when the Doctor used the words Diffused Lewy Body Disease. Lots of tears and "What am I going to do now" questions. So many "oh, so that's why" moments where the working diagnosis seems to explain so much of why these past few years have been so difficult.

It started because I couldn't remember words; simple every day, nothing out of the ordinary, words. Conversations with friends became difficult as I tried to share my thoughts on a particular subject. It was half storytelling and half the game of Password, trying to help my partner figure out the word I could not come up with. I stuttered as I struggled to express myself with words that were in my head but would not come out of my mouth. I knew the words were there; I just couldn't find them!! 

I mentioned the word loss and how frustrating it was to the PA I went to see about my bad shoulder. After several questions, she decided to administer the MoCA, also known as the Montreal Cognitive Assessment, which checks for any problems with cognitive functions. I did my best and even knew when I made a mistake (I called a rhinoceros a hippopotamus). My score for the test was 23 out of 30 where a normal score is 26 or more. The PA referred me to a Neurologist. 

A month later I was talking to a Neurologist who noted that not only was I forgetting words but that I had been misplacing things or repeating myself for several years, Maybe I had been forgetting words too but they became bothersome when they became more frequent. Whatever the case, he ordered an MRI and a PET Scan of the brain. The PET Scan report mentioned possible early onset of Lewy Body and the doctor asked about hallucinations, which I denied, and it was dropped and I was to come back in 6 months. 

I came back but there was more. I had been having problems with my hands shaking for some time. It usually happened when I was holding something, such as a fork, but it was getting worse. He noticed the shaking, I would shake more when agitated, so he did an arm test where he would hold my hand that I had made into a fist, and move it around as I raised my other arm up and down. He checked both sides and came up with cogwheel rigidity. He then had me walk and noticed that my right arm had reduced swing. He ordered a DAT scan. I knew it, I had Parkinson's. Okay, I didn't know it but I was pretty darn sure they would diagnose it. Of course, the test was several months out and of course, it came back negative.

November 10, 2023 everything changed. I knew the test was DAT scan was negative and expected to be told he would see me in 6 months or something in that realm. Instead, he asked more questions, checked my arms, and checked my walking. Told me that he was increasing my Aricept and that I was getting a second opinion at UCLA (before, he always asked).  He then gave me a working diagnosis of Diffuse Lewy Body Disease and ordered more tests to rule out any "young onset dementia syndrome". 

Do you know what the first question I asked was when he stated the diagnosis? Can I keep working? I was less than five years away from retirement and to get the maximum retirement, I needed to work the five years. He was shocked I was still working and began to discuss home health care and disability. I left confused and frustrated; more tests, more appointments, and more questions. On the way back to the car, I stopped and looked up Lewy Body Disease and the first thing I found was the life expectancy after diagnosis. I hurried to the car where Kevin was waiting. put my purse in the back, got in the car, and said to Kevin, "I'm going to cry now" and then I bawled. 

To Be Continued...