July 31, 2019
The other night, my friend Lori asked “How are you?” Only it wasn’t a pleasantry that you respond to with an “I’m fine. How are you?” She really mean t it to be a question. She truly wanted to know how I am doing.
The question caught me by surprise. You’d think I’d have a good answer, living with myself as I do. But living with Parkinson’s Disease doesn’t always allow for easy answers even to the simplest of questions.
Too often when the outside world hears the words “I have Parkinson’s Disease” I suddenly find myself lumped into a single and simple defining box. I become the sick. I become the hopeless. Friends remember their grandmother who was confined to wheelchair and see that as my destiny. They watch the six o’clock news and the currently running commercial that says “50% of Parkinson’s patients have hallucinations and delusions” and they assume faltering speech or physical difficulties imply that my mind is going. But here’s an update. In the 21st century, few PD patients end up in a wheelchair. And 50% of Parkinson’s patients DON’T have hallucinations and delusions. In fact, the majority of those who develop mental issues with their PD are not young onset patients but rather are those who don’t develop their disease until late in life. I am not your grandmother. PD patients are each unique. PD affects each of us in different ways. Me? I consider myself to be one of the lucky ones.
In 2015, I quit my job. Few people understood the real reasons why. My problems with PD were not widely known. Sitting at a desk for eight hours every day was making me less mobile. I was finding it more difficult to stand and walk across the room. My bones ached. My tremor made it hard to work my computer keyboard. A bigger problem was that I was falling asleep at my desk. From 1:00 to 4:00 each afternoon I was more unconscious than alert. I took work home at night and on weekends but I still struggled to keep up. I was working in the art world. I had a head filled with creative ideas and I was given a wide latitude to implement them (Thank you, Lori Robishaw, wherever you are!). It was a job I had loved but PD was sucking the fun out of it. It was unfair to my employer, the co-workers depending on me, and an organization that was vital to the community. When I started falling asleep not only at my desk, but also in my car while driving home each evening , I knew I had to make a change before I hurt myself or someone else. I made plans. I handed in my resignation.
In some ways being unemployed was a relief. In another, I mourned the loss. I questioned my decision for months afterward. I missed the work. I missed my friends. The loss of income and the loss of health insurance, well, others can only imagine how scary that was. But I didn’t feel like I had a choice. PD had forced me out the door.
In the long run, it was the right decision. Being at home allowed me the freedom to address issues and follow my own natural rhythms.
So, how am I today?
I have good days and bad ones. I have a handicapped placard now for my car. Some days I don’t need it. I park as far away from the shopping center door as I can get, just for the exercise. The next day I might need the handicapped parking spot right outside the door. Yesterday my movements may have been slow. Getting in and out of a chair was a struggle. I climbed the stairs one step at a time. Today I might hop out of bed and run up the stairs as if I had no problems at all. What is the difference between yesterday and today? I have no idea.
Medication controls many of my symptoms some of the time but not all of the time. I am at my best in the morning. 5 – 9 p.m. are my hardest hours. When medications wear off the tremors return and my feet and hands will cramp. Medication to reduce tremors causes, guess what? More and worsening tremors and wild movements when the medication wears off. Yeah, that really sucks. Medication can create other side effects too that are controlled with more medication. It is a vicious circle into which I have, so far, refrained from getting caught.
Common PD medications can cause compulsive behaviors. A high percentage of PD patients have been known to gamble away their entire savings account or shop until they really do drop — a small or sometimes large fortune. They can be very good at hiding their activities from friends and family until it’s too late. While I’ve never gambled or shopped excessively I have felt the medication’s compulsive draw in other ways. I completely understand how these issues that many think are a “choice” are not a choice at all.
In my own case, medication will cause me to work obsessively on whatever is the project of the day. I may fall asleep unexpectedly during daylight hours but the minute 9 p.m. hits I can transform into a nocturnal owl. I can work obsessively on a project all through the night and all the next day without feeling a need to sleep. Medication can enhance and enlarge my every thought, feeling, craving, desire, and idea. I don’t even realize it is happening. If I felt sad, it makes me that much sadder. If I feel a craving for pizza, I will move heaven and earth to get a slice of pepperoni with extra cheese. Riding in the car can terrify me. Distance is distorted. Speeds feel way too fast. Keeping my medication doses low, helps to keep those fears and compulsions under control. But mostly, it’s a battle of mind over matter.
They tell me that the progression of PD is fairly consistent. Some people progress quickly and others not so fast. I am one of the very fortunate. My progression has moved at a snail’s pace and is expected to continue that way. It took ten years for the tremor that began in my little finger to progress to my right arm, right leg and jaw. So far there has been no indication that it is spreading to my left side.
The tremor is the symptom that I find the most bothersome because it is the one that I deal with every day. When working on art projects, drawing and painting straight lines are a challenge. Holding a camera still to take a crisp, non-blurry shot is another one. Typing on a keyboard can be impossible at times. A tremor will add extra letters or spaces to my words. This drives the online grammar Nazi’s crazy. Yeah, I know. It drives me crazy too. Voice to text software is an amazing invention but learning to use it is not so easy. I’m working on that.
I don’t suffer from many of the mobility problems that other PD sufferers have. My feet don’t freeze when I’m walking and my balance has remained relatively steady. I can still argue politics with the best of them, much to the dismay of some of my opponents! My health crisis has made me more conscious than ever of the need for better healthcare in this country. I still excel at the mental games and tests that are a part of the clinical trial I participate in. At least that’s what they tell me. I don’t feel particularly sharp, but some of the fog I feel is likely medication induced. Despite my many issues, I consider myself to be one of the lucky ones. I can still pull weeds in my garden. I can still feed the birds and water the wild critters that visit the yard. I can still shop the thrift stores with my daughter and travel with my husband and family, and I can still do the things I’ve always most enjoyed. And if I can’t do those things today, well, I know tomorrow is less than 24 hours away and it will be a new day with new possibilities.
Keep thinking. Keep walking. Keep pushing. Keep pulling. Keep dancing. Keep painting. Keep writing. Keep arguing. Keep seeing. Keep fighting. Keep loving. Keep doing. After ten years of living and learning, the “keeps” have become my daily goals.