4 Shitty Days…….

The past 4 days have been the worst 4 days with Parkinson’s I have had in several years. Especially since having Deep Brain Stimulation Surgery. It’s been pretty shitty, not that Parkinson’s disease is a walk in the park. What frustrated me the most, is it hit me out of nowhere. I have always had rough days here and there. Anyone with Parkinson’s can tell you that, that happens a lot. Let me tell you all about them. Just so maybe it can help you understand what People with Parkinson’s deal with.

It started with me this past Thursday morning. Every morning I wake up sore but it’s typically just in my neck and shoulders. That morning, I woke up and my entire body was sore. I got up and did my normal ritual of chilling for a bit, having my morning Diet Pepsi and heading to my office to start working. It wasn’t easy getting around that morning. I just felt “off”. I didn’t have any tremors or obvious symptoms like that, but I was physically moving slow and when I sat down to type my password in my computer, I went to type my password and while the password was there in my brain, my brain wasn’t connecting to my fingers. My fingers were moving very slow. Everything was slow. It’s like when your feet are in wet cement, but instead it’s my brain. My body continued to hurt as well. It was painful to get out of my chair. It hurt to walk to the kitchen. This went on all day, until I went to bed. It was a shitty day.

Friday morning I woke up and again, my entire body was sore. I sat up and turned to take my morning meds. When I got to the pill bottle with my Parkinson’s meds in it, I couldn’t get it open. Not the first or second try. My brain was again sending the signals but my hand was not responding. On the third try, I got the bottle open but I had to will my brain and hand to talk to each other and start twisting the lid with a tighter grip and willing my hand to turn to the lid to the left and saying, “Lefty Loosy, Righty Tighty” in my head and got the lid off. The rest of the day Friday was just like Thursday. My brain stuck in mud, my fingers going slowly, I am wearing out the backspace key on my keyboard and I am having to take several breaks through the day just trying to get my brain together. I also continued to be in pain. Friday, it was a shitty day.

Saturday morning started out like Friday morning did. Fortunately, I didn’t have to work. I sat for a while on Saturday in my recliner just to relax. Had my Diet Pepsi and then decided I needed to get up and just move. My office was still a mess, other than my desk, and I still had a couple boxes in there that I had barely touched since we moved to our house last November. I just felt that if I just did things in my office, at my own pace, I knew I would feel somewhat better that I at least gotten some shit done. My body was still sore but not quite as bad as Friday, so I took that as a win! I put up 2 floating shelves that I had made when we still lived in New Braunfels. Then I started putting stuff on those shelves and got my record player set up that I had gotten for Xmas. That felt good to get that done. There was still some wrapping and papers in a corner so I got a trash bag and cleaned all that up. When we bought this house, we bought a day bed that we decided to put in my office so it could also be used as an extra bedroom when our kids and grandkids came to visit, allowing us to have 2 guest bedrooms when needed. I got that day bed all cleared off, folding sheets and so on and then made the day bed up with the sheets and comforter we had bought. I vacuumed my office floor and was beat. I got done around 3 and I could barely move. I struggled through the day with simple tasks such as opening my pill bottle to folding sheets and my t-shirts. It was an accomplished, but shitty Saturday.

Now here we are and Sunday morning comes. I woke up sore this morning but it was mostly like every other day in that I was mostly sore in my neck and shoulders like every morning. My legs weren’t as bad. I took this as a good sign. I had two projects to get done today. I had to get a cat door installed in my shop door, which is made of metal. The big reason for this is because we have a lot of chickens and we also have outdoor cats on our property. Yes, the cats and chickens do get along. I had been leaving the garage door on my shop open a bit because sometimes the cats would sleep in there and we didn’t want them getting stuck in there. Well a few of the chickens took that as their opportunity to start roosting overnight in my shop, thereby shitting all over some tools and my workbench and so on. Now you know the reason for getting the cat door installed. I also needed to put a cat door in a door in our mother-in-law suite that is across the patio from our house. My mother in law needed it so her cat would have a place to go and eat and it would also keep her dogs from getting in the cat food and so on. The shop door, being a metal door, is heavy. I got it off the door frame and on my saw horses. Got my grinder out and cut the opening and installed the cat door. I then hung the door, took a break and then started on the door for my mother in law. At this point I am starting to hurt pretty good. Fortunately, its an interior, hollow core door, so it was pretty easy to get that pet door installed and then hung that door. Now I am hurting pretty much from head to toe. Again, another accomplished, but shitty day.

I don’t know what tomorrow will bring. I don’t know how I will feel in the morning. I can’t worry about that. Thankfully I am going to see my Movement Disorder Specialist this coming Tuesday. I am hopeful he can make some changes to my DBS system as I haven’t felt quite right since my new Generator/Battery was put in last October. Not that I have felt way off or anything, I just know there are some adjustments and fine tuning that are needed. As my mentor, Tommy Dubuque, used to tell me, no one knows our bodies and our Parkinson’s more than we do.

Through it all, I try to remain positive but these past 4 days have really worn on me mentally. I know that my Parkinson’s will continue to progress. Eventually I won’t be able to do the things I got done this weekend. That thought terrifies me in that I don’t want to let go of the things I enjoy doing. However, while I can do these things, I will do my best everyday to do all that I am capable of doing. We only get one shot at this life. That’s why my motto is, Live Your Best Life NOW! Live in the moments that each day gives you. Always do what you can and try not to focus on the things you can’t do. It’s easier said than done for sure. Especially when some things are out of your control, like a disease that you cannot stop. Even when you have 4 shitty days…………….

As always, Peace and Love,

~Darryn