Travels with Lewy. Stop! I Need A Break!!

There comes a time in all of our journeys when we just have had enough. That time was this past week for me. I had been having some vision problems, mostly double vision but also some blurry vision. I just couldn’t see anything clearly and I was also battling diahrea all last weekend. When I called my Neuro on Monday, I was told to go to ER right away. When we got to the ER, we were 3rd in line to get triaged and if lucky 6th in line to get a room in ER. In the condition that I was in, I just propped myself up against a wall and sat and waited. I didn’t realize that in my corner of the world that on 11-9-2020 was national go to the ER day. From what we were told, every emergency room in our county was on divert, meaning send patients elsewhere. We got into ours just in time.

During Triage, according to the Star Trek thermometer, my temp was 98.9. In less than an hour when in an actual room, my temp was 103+ according to the under the tongue variety. Ding, Ding, Ding. Everyone put on the yellow gear, eye covering, double mask and gloves. I thought I was in a bad syfy flick. IVs were added, tests were added. First one was a rapid Covid test. Then a LP, Lumbar Puncture, or more commonly known as “This is Spinal Tap”. Then off to a Catscan of my brain. Back to my cubby in the ER. A new nurse came in and said that I probably wouldn’t have a room that night but they would get me a “real” bed. The new bed felt great compared to the stretcher and the nurse was right, I got a room in the morning, 4 in the morning. A very interesting first 12 hours in the hospital.

Funny things you realize about hospitals when you haven’t slept. Do doctors really read your chart when they are looking at it?? 17 hours, 4 tests, a gallon of blood at a needle a time, asked for your name a million times, and a doctor who has not introduced himself asks “what brings you in”, for at least the 15th time in 17 hours; and he makes a face when I say that I am just here to meet nurses. This was the point when I said a prayer to my Lewy keeper to not let me go but just let me back in the non-Lewy world for a few hours. Let me not get sick so often. Let me not groan and grunt when I try to stand up. Let me not look for places to use my non-cane hand as a brace if needed. Let me remember people’s names. Let me remember my name. Let me do a couple of simple chores without getting exhausted. The list is long so basically, let me be me before I ever knew about Lewy. Let me off the coaster for a few hours. Maybe make an area for us Lewys’ where we can share stories without worry of crashing. Just for maybe a couple hours a month. That isn’t asking too much is it?????

The rest of the hospital stay was fighting off a fever that maxed at 105+ and listening to docs who told me they knew what LBD is, say they couldn’t explain what is going on. Told Catscan and MRI showed increase in white matter and some cells that I should talk to my Neuro about. I could have told them that without turning on the million dollar machines that you are billing my insurance for. The only thing that I couldn’t understand was that my fever broke early Thursday and by early afternoon I was being discharged but not before they took an MRI that showed nothing new according to them. I need to wait another 4 days until I see my family Dr to get print outs of all the test results for my own files.

(Photo credit should read SADATSUGU TOMIZAWA/AFP via Getty Images)

So again, Please, please Lewy please let me off or stop the coaster for a break so I and my family can get a break. My wife, Amy, is my caregiver as well as our son’s, 15, and her brother’s who both have Autism and ADHD. We are Blessed that she and our daughter, 12, are in our lives to help us everyday. But, Lewy, please all 5 of us need a break.

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