February 10, 2021
I made it through the wearisome year known as 2020 to see January of 2021. January is a month of significance in my life. It was a January many years ago that I first noticed neurologic symptoms that would later be attributed to young-onset Parkinson’s disease (PD).
Twenty-three years have slipped by since that fateful January. In the blink of an eye, all 5 of my daughters became adults. We took our youngest daughter to college on the west coast last fall. The first of our daughters got engaged last month. Life keeps barreling along at warp speed.
I’m thrilled that my body has held up well enough to celebrate these milestones with my family. It is empowering to me to know I’ve made it this far. I can’t begin to predict what shape my body will be in one year from now, so I’m sure I never stopped to consider what my illness would look like after 23 years. To be honest, I thought Parkinson’s would have a cure long before I would go two decades with this disease.
Nonetheless, here I am. I am 23 years older, adorned with considerably more wrinkles, and have come to grips with this progressive neurologic disorder - an acceptance of the monster that controls my body and resignation that it is probably here to stay.
I last wrote of my symptoms 3 years ago, and I am surprised how different my PD looks today. Some of my symptoms have improved, such as my dyskinesias. I had deep brain stimulation surgery 2 years ago, which has been a life-changer. My DBS targeted a part of my brain to halt these constant involuntary movements, thus providing tremendous relief. Having DBS done was the right decision for me. I also consider myself fortunate to have never suffered from the tremors commonplace in Parkinson’s.
I would never wish the fate of Parkinson’s on anyone. Over the past few weeks, I’ve spent a lot of time reflecting on how this illness has pervaded my body due to neurons in my brain dying off, which is the hallmark of Parkinson’s. Though similar symptoms frequently occur among people with PD, no two cases are identical. I am about to describe what Parkinson’s currently looks like in me, including similarities and differences to others afflicted with PD.
My brain is losing the ability to make and store dopamine. Dopamine is a chemical in the brain that directly affects movement, mood, balance, sleep, memory, learning, and attention. Of all the dopamine functions, movement (or lack thereof) is what I struggle with the most.
The activities of my day revolve around the dosing of my medication every 3 hours. When my medication is working well, I am relaxed, coordinated, and can do most physical activities. I go grocery shopping, run errands, and walk the dog during these periods when I am moving well. My medication can start wearing off after 2 ½ hours, though, and that’s when I struggle the most.
During these wearing-off periods, my muscles are unable to relax from head to toe. It’s a painful condition, but not in the typical sense of how most people define pain.
Think of a time when you have been very tense. Your entire body tightens, and you may even tremble. Not many people care for the discomfort associated with feeling tense and unable to relax. On good days, my muscles may become stiff like this for just an hour or two total all day. However, a poor night’s sleep or an unexpected stressful event can catapult my muscles into this tense mode for several hours. With these prolonged stretches of rigidity, I cannot find a comfortable position, whether sitting or standing, and the discomfort morphs into pain. My sole desire then becomes to achieve a moment without the pain associated with tense muscles. My pets no longer sit in my lap when I reach this point, annoyed by my fidgeting.
These bouts of stiffness also hinder my ability to walk. At this stage of my Parkinson’s, I find that the top half of my body naturally wants to lean forward (a stooped posture), throwing off my center of gravity, and thus my balance. My body compensates by taking tiny stutter steps while walking on my toes to prevent me from falling and face-planting on the floor. As bizarre as this sounds, there is a term for walking in such a way - festination. I don’t recommend this style of ambulation, as it is neither efficient nor safe. My front hallway, which runs from the stairs to the kitchen, is less than 14 feet long, a mere 7 steps when I am walking well. On days when I’m not moving well, it is the equivalent of the length of a football field. At least the hallway is less than 4 feet wide, so I can put each hand flat against a wall to steady myself as I painstakingly make my way into the kitchen.
Sometimes, I can goad my brain to revert back to a normal gait by walking to the beat of a song. For this trick to work, I had to choose a song that is so entrenched in my brain, I can sing it without thinking about the words. Having raised 5 girls, naturally, my go-to song for this purpose is Bibbidi-Bobbidi-Boo. It’s quite a sight to see me intensely focused on getting down the short hall while walking on my toes, trying to grip flat walls, and mouthing the words to this Disney classic.
I walk on a treadmill regularly to retrain my muscles. The treadmill has handles I can hold onto, enabling me to focus on throwing my head and shoulders back and placing my heel down with each step instead of my toes. Exercise has been proven to be of great benefit for people with PD and helps me quite a bit. No matter what my schedule, I make daily exercise a priority.
As an illness, PD is exhausting. Trying to coerce rigid muscles to coordinate themselves enough to move or walk when they feel like they are made of cement is a workout like no other. My facial muscles and jaws can stiffen to the point that trying to speak becomes an onerous endeavor. My brain works profoundly hard to summon all muscles to coordinate themselves and work together as a team instead of against me. Physically, I am bone-weary tired. Mentally, I am equally as exhausted. The mental wear is the equivalent to spending each day with a large group of boisterous toddlers, trying to convince them to listen to me and all get along together nicely. In my case, the toddlers are all my muscles. I now fully appreciate the times each day when the stiffness subsides enough that I can function normally and easily accomplish mundane tasks such as walking across a room.
I wrote about apathy in Parkinson’s 3 years ago. By definition, apathy is a feeling of indifference or a lack of interest, enthusiasm, or motivation in activities. After a great deal of thought on the subject, I don’t believe I suffer from apathy in the truest sense of the word. When my muscles are very stiff, my brain fixates on how uncomfortable I feel. To add in a second task, such as engaging in conversation, proves to be a monumental challenge. Since PD also affects the muscles in my face, at times, I have the desire to speak, but my facial muscles are physically unable to form the words. Internally, when I recognize all this is happening, my brain goes into frantic mode. I don’t want the other person to think I’m not interested because that is usually not the case. It’s hard to feel present in the moment when my body and brain are consumed by pain.
My brain quickly becomes overwhelmed, trying to stay engaged with those around me while consciously ignoring my physical discomfort. Sometimes when I don’t reply and appear dull and flat, it is because my beleaguered brain is inundated with too many sensory stimuli to process all at once. During these times, I think my brain is trying to protect itself and just shuts down the conversation. I would describe my discomfort at this point as mind-numbing, as I can’t think or talk. My problem is not disinterest or lack of enthusiasm. The main issue is an uncooperative, utterly exhausted, uncomfortable body.
I still enjoy cooking and find it to be one area of my life where my brain can think through menu options and combinations logically. I have maintained the confidence and enthusiasm to learn to cook new dishes. Preparing successful meals validates that I have a smidge of control over one tiny aspect of my life. Now that my body moves slower, preparing an elaborate dinner often takes me most of an afternoon. To me, a great meal is worth the time and effort.
Doctors have told me that young-onset PD usually progresses slowly, which is accurate in my case. After 23 years, I am still independent and able to care for myself, and for that, I am incredibly grateful. I try to control the areas of my life over which I have control. For now, I rely on exercise, keeping my mind sharp, eating healthy foods, and making sleep a priority. I relish each milestone I reach with my family and cherish time spent with my incredible husband. Life doesn’t owe me anything. Yet, I wage war with my muscles day after day because I believe I still have more life to live. And I hold onto hope that sometime soon, in my lifetime, there will be a cure for Parkinson’s disease.
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