I was diagnosed with Parkinson’s on October 20, 2020. It is an easy date to remember.
I am sure I had the disease for several years before that. I was first diagnosed with Essential Tremor, which happens to quite a few Parkinson’s people. I am wondering if I ever had that, but I don’t suppose it matters now.
I have learned that Parkinson’s hits everyone differently. Many are tremor-dominant, but some don’t have tremors at all. Many have gut issues, but not all. Some have posture problems, some have rigidity issues, or handwriting difficulty. And that is just what you see on the surface.
Parkinson’s can cause hallucinations, depression, panic attacks, dementia, anxiety, and delusional behavior among other things. It can cause digestive issues, speech problems, loss of smell or facial expression, sleep difficulties including sleepwalking, nightmares, and insomnia. It really is a crapshoot. Imagine a dartboard with all the symptoms on it, blindfold yourself, and throw a dart to see what symptoms you will get. You might miss the board and get nothing…for now.
Shortly after I was diagnosed, I joined an online support group. It was both comforting and terrifying. Comforting in that I could find any number of people who were going through what I was going through, who could give me helpful tips, and who could talk about the different symptoms they have. Terrifying because they talk about the different symptoms they have. I drove myself crazy wondering which symptoms I was going to get and which symptoms were going to miss me. I don’t do that anymore. Most of them are beyond my control.
I remember being relieved at the diagnosis. Not that I am happy with having Parkinson’s Disease, but it was good to know the problem so I could deal with it. I am tremor-dominant, and I have walking issues. I don’t have many of the other symptoms (Thank God). Although depression can rear its ugly head in the wee hours of the morning. Lack of sleep and stress can severely exacerbate the symptoms.
I also have arthritis in my knees, and Parkinson’s makes it worse. I have quite a bit of trouble walking, but I am changing some things to try to get better. I used a cane for about a year, but I thought it was making my gait worse. It’s like if you hurt your ankle — a little sprain or something — if you limp on it all the time, you normalize the limp. I decided my cane was doing that. So I bought rolling walkers, and I am moving better. I have one for “out on the town” (outside the house), one upstairs for safely getting to the bathroom in the middle of the night, and one for work.
I hesitated about getting a walker. See, it feels like quitting, like giving up, giving in to the disease. Every time I change something about my life pertaining to this disease, it feels (in those wee hours of the morning) like I am throwing in the towel, letting Parkinson’s win. In the bright light of day, however, I can see that getting something that makes dealing with this horrible thing just a bit easier means I can fight a little harder, a little longer. I can get a new perspective. So, I have walkers. I also have grab bars for the shower, and a shower chair. And a stepstool for getting in bed.
I also have a wheelchair for when I can’t deal with the struggle. It used to belong to my dad, so when I’m in the wheelchair, I feel like he is with me.
I had brain surgery in May of 2024. It’s fun saying that; people freak out a bit, but it’s not like it is rocket science. I got a deep brain stimulation system, or DBS, put in. It helps. I have a wireless charger; I recharge the battery every week. I got a software update that makes the DBS adaptive, so it gives me the level of stimulation I need at any given time. I don’t have the peaks and valleys between doses of my medicine. It isn’t for everyone; I am thankful that I qualified.
I don’t always have a sunny attitude. Sometimes I feel like a burden (This is where my husband says, “You aren’t a burden,” to which I respond, “Yet”). I feel envy for people who can walk, just walk. I miss how easy that used to be. Believe it or not, I miss being able to clean my house. But I can sit on my stool in the kitchen and hand-wash dishes. I wasn’t all that crazy about the chore in the before-time, but now I like it—it is a way I can contribute.
I do try not to think of all I have lost. Sometimes that’s hard to do. I guess I miss feeling “normal.”
Maybe the trick is to redefine what normal for me is.
I’ll be honest. Sometimes…in the wee hours…I feel like giving up. But I don’t. I am fortunate in my support system: I’ve got my family. My friends. My faith. And my Irish Stubbornness.
They will keep me going.
Kat Shelton studied theatre and earned her master’s degree in Lighting Design from the University of Mississippi. She has been using her theatre education in one way or another for much of her life. Even though she now works in an office at a theatrical supply store, she found her creative outlet and her solace in writing. Even if many don’t see her work.
