April 19, 2018 - Though this was written 3 years ago, I am posting this piece to illustrate how my Parkinson's has changed in 36 months. I will cover my current symptoms in a future post. PD is an illness of one's past, present, and future.
I am the only one awake at my house right now. I’ve decided to write tonight as I stay up passing the time, waiting to take two more doses of medication that will coax my body to sleep. This is my regimented daily routine. The slightest variation in this schedule could negatively affect me for the next 24 to 48 hours. So, I sit here at my computer, with one cat flanked on each side of me, as is their routine about this time every night.
I’ve had Parkinson’s Disease (PD) for 20 years, and it absolutely sucks. Typically, I don’t like people telling me things or situations “suck,” because I just don’t care for the use of that word in that way. At this moment, however, I can’t think of a better phrase - that one word so effectively sums up my thoughts on this illness.
Twenty years is a long time to be sick. I was 29 when my symptoms began, and I found it easy to spend the first 10 years in denial. My disease didn’t outwardly progress much for about 15 years, again making it easy to ignore. For the most part, I was able to raise my five young daughters and work without dwelling on the fact that I had a progressive illness that was - and still is - killing parts of my brain, and, at present, has no cure. I certainly appreciate the fact that my illness progressed slowly enough to give me some peace of mind for the first 15 years. But it had to start getting worse at some point, right? Right. So, in just two brief paragraphs, I’ve brought you up to speed on my present-day world.
Three and a half years ago, genetic testing confirmed that I have Young-Onset Parkinson’s. Qualifying for this unique distinction requires an onset of PD symptoms between the ages of 21 and 50 years. I am not writing this to wallow in self-pity, though. (Don’t get me wrong; I do spend plenty of time feeling sorry for myself, but that is not my current frame of mind). I guess my goal of writing tonight is to describe what PD looks like for me after 20 years.
My daughters, who range in age from 23 to 15 years old, have only ever known me with PD, and that makes me incredibly sad. I used to smile, laugh, and enjoy life. My husband remembers that me and misses her profoundly, but that person is just a vague memory for me these days – a person that, for the most part, I can’t access anymore. I am doing my absolute best every day, but I’m not sure how many people recognize that fact. I’ve found that most people don’t know anyone who has been afflicted with PD for 20 years. And let’s face it, in today’s always-on-the-go society, very few have any desire or incentive to try to understand why I am the way I am. Please stay with me as I transition into a public service announcement.
I like words and definitions. As such, I will try to describe and/or explain a couple aspects of my 20-year-old PD that are unfamiliar to most people. Along with each definition or description, I will include a score on the Scale of Suckiness According to Elaine, or SOSATE. SOSATE scores range from 1 to 10, with a 1 being the most mild form of sucky and a 10 indicating something so awful that the word “sucks” requires a few adjacent obscenities to achieve an accurate description. (You can feel free to embellish the 9s and 10s with words of your choosing.)
I’m going to start with dyskinesias. Quite simply, dyskinesias are involuntary muscle movements of one or more parts of the body. They look a bit like tics. In me, they can look like head bobbing, twisting of my torso, twitching of my hands and/or feet, rocking back and forth, or just an overall inability to sit still. They are a result my Parkinson’s progression and of my brain’s inability to store excess dopamine. I take high doses of synthetic dopamine tablets every 3 hours, in order to flood the dopamine receptors in my brain that are actually still working (death of these dopamine receptors is a hallmark of PD). The deterioration in my brain, in conjunction with the high doses of medication I require, lead to these dyskinesias. They are utterly exhausting and can continue for hours without any break. Although virtually impossible for me to control or stop them, dyskinesias at home can sometimes score at a mere 1 or 2 on the SOSATE scale. In public, however, they can be especially brutal. Once they start in public, I can usually count on them continuing until I am safely back in the privacy of my van or at home. In public, the SOSATE score often creeps up to a 7 or 8 range nowadays. Additionally, once the dyskinesia SOSATE score hits about a 4, I am definitely not the person to be recording home videos. (I think some of my family members have incurred motion sickness from trying to watch videos recorded while I was caught in the throes of dyskinesias.)
Dyskinesias have a tendency to make a person self-conscious. I don’t mind when children curiously look at me, because they have no idea why my body moves the way it does. Adults, though, are a different story. I think many believe I have a drug addiction or that I am ADHD. I tend to not make eye contact when my dyskinesias are raging, because it’s hard to see the odd expressions people sometimes give me. Despite the fact that my body looks completely out of control during these episodes, my brain is functioning quite normally. I can see people staring and hear people talk about me as if I’m not there. I know when dyskinesias are occurring and am fully cognizant of their increasing severity, as my Parkinson’s worsens. My body is a prison in which I am trapped 24/7. Many days, the physical pain from dyskinesias, accompanied with the associated pain of stiff muscles, reaches a point that I can no longer speak and struggle to hold my breath and bear it. It’s like a full-body Charley horse that can last for hours. SOSATE = 10!
Another distinct term associated with PD is “freezing up.” This is another source of frustration that occurs more frequently the longer one has PD. Most often, it occurs when I am walking. I can be bopping along, happy as a lark, and then without warning, my feet quit moving, as if they are cemented to the floor. Typically, though, my upper body keeps moving forward, which is the perfect recipe for falling. Facial muscles can freeze as well. A person with facial freezing has tremendous difficulty making any facial expressions including a smile. So I will be at the grocery store with continual dyskinesias, looking mad at the world, and abruptly find myself unable to walk in the middle of an aisle. These experiences make me want to blend into the background. SOSATE = 7.2
Next on my list of definitions and symptoms is apathetic Parkinson’s. The word apathetic means showing or feeling no interest, enthusiasm, or concern. Roughly 50% of people with PD develop apathy. What does it look like? Well, it’s a person who has lost interest and motivation in much of what life has to offer. At times, I am listless and feel detached from everything, resulting in a blunted emotional response to anyone near me. Often, others misinterpret my behavior and take it personally, which leaves me wanting to self-isolate. With friends and family, my brain struggles to think of topics to discuss, and the harder I try, the more overwhelmed and detached I become. To socialize just for a couple of hours can knock me down for 2 or 3 days. If I’m around you while my dyskinesias are going nonstop, please understand that I am physically and mentally exhausted. Attempting to carry on a conversation at this point is too much for my body. These are all things I cannot control. Surprisingly, SOSATE = 2. And, the irony here is that I don’t care that I don’t care.
My #1 priority continues to be my husband and daughters. I want to spend as much quality time with them as possible. But I am also fortunate to have incredibly supportive family and friends in my life. With more than 10 million people around the world afflicted with PD, odds are good that you will know at least one person with PD during your lifetime. Please remember that a person with any sort of medical condition can always use another friend.
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