No real change to my mobility status. The left leg has limited movement and no load bearing capability. The right leg has no movement and no load bearing capability. It’s been a surreal experience for me. I just think I’ll get up and get something, turn on my bedside lamp, or go to the bathroom. Nope, can’t do any of those things. We have 24/7 caregivers with us. A great crew, but it’s an adjustment to having someone else in your house all the time. We’re working our way through it though.
A couple weeks after I got out of the hospital, I started having seizures, you know the eyes rolling back in your head, can’t talk or control your movements and you start shaking. Back to the hospital for the fifth time in 3 months. They determined there’s a tumor on the inside of my skull, pressing against the brain causing the seizures. They gave me medicine that lowers my sensitivity to brain wave activity. The seizures ended and I was sent home.
It didn’t take long to find out the new meds caused severe depression and killed my taste buds. Working with my personal gp we were able to modify the drugs the hospital prescribed so that I had no seizures and no depression or taste problems.
On balance I’m doing pretty well right now. It bothers me that we have done nothing to directly address the tumor in my skull and while we irradiated the two tumors on the spine that led to my partial paralysis they are both still alive and growing.
I’ve not been given the warmest of feelings from the medical people. The neurologist at the last hospital I went to told me I needed to stop going to the hospital because I was running out of get out of the hospital alive cards. I asked my gp about irradiating the tumor in my skull. Aside from the issues about it being next to the brain, he said these tumors are going to start appearing like popcorn. I told him I really hoped to make it to 2020. He said to concentrate on everything that’s good in 2019. Still I have a positive attitude and enjoy most days. My apologies for taking so long to provide this update.