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In August 2019, my life changed dramatically when I received a diagnosis of Parkinson’s disease. A doctor informed me that the initial treatment option, Sinemet (comprised of Levodopa and Carbidopa), tends to lose its effectiveness after a period of roughly five years, with data suggesting that about 50% of patients find it no longer beneficial after this timeframe.
As I neared the five-year mark since my diagnosis, I began to feel a sense of optimism, believing I might fall into the more fortunate half of patients who maintain stability on Sinemet. Remarkably, I noticed that the tremors in my left hand had seemed to vanish, and my previously disruptive REM Behavioral Disorder had significantly improved after I incorporated a nighttime dose of melatonin into my routine.
However, my perspective shifted when my wife pointed out the subtle yet concerning signs of a resurgence in my symptoms. She observed that a couple of my fingers were beginning to tap rhythmically, initially just slightly, but their movement grew increasingly pronounced. Additionally, she noted that my left hand would often curl tightly into a fist while I slept, prompting her to attempt to gently pry my fingers apart, only for them to return to their curled position almost immediately. It became evident to me that most of the time, my fingers were drawn up, resembling the claws of a sinister creature. Although I could consciously unfurl them with effort, they would revert to their clenched state as soon as I ceased focusing on them.
Since recognizing this shift, it feels as though Parkinson’s has begun to take control of my body. A series of new symptoms have materialized without warning:
- I find myself perpetually exhausted, requiring significantly more sleep than the typical seven hours I used to manage.
- My once-stable appetite seems to have vanished, frequently leaving me disinterested in meals.
- Even while sitting quietly, my left foot begins an involuntary rhythmic tapping.
- My vocal quality has become unreliable, oscillating from my usual high-pitched tone to a hoarse, unsteady pitch that is increasingly concerning.
- Processing information has become a cumbersome task; my mental response time has slowed considerably, often frustrating my wife as she waits for my replies.
- Multitasking has transformed into a daunting challenge. While I can manage to engage with a single stream of information like watching television, I struggle to process my wife’s inquiries, often responding with “what?” as I try to catch up.
- Despite my efforts to speak clearly and loudly, my wife often tells me that I mumble and am difficult to hear, which adds to my frustration.
Even minor stressors trigger intense tremors within my body and worsen my other symptoms. Recently, my life has been riddled with stress, amplifying my challenges even further. Additionally, the cold weather has proven unbearable, exacerbating my discomfort. I frequently experience a blend of anxiety and depression that feels unshakeable. To address this, my neurologist has prescribed an antidepressant, and I earnestly hope it will take effect soon to alleviate some of my stress and, in turn, improve my symptoms.
By comparison to many individuals navigating Parkinson’s, I often remind myself that I should consider myself fortunate. Yet, the reality is that I am not as lucky as I had once envisioned. As a scientist, I find myself meticulously monitoring my Parkinson’s progression, which brings me profound sadness as I witness the relentless emergence of new symptoms. Although to an outsider I may appear to be managing a mild form of Parkinson’s, with few external indicators of my struggle, internally, I am fighting a challenging battle that leaves me discontented. I plan to consult with my neurologist later this month, hoping she will provide insights or suggestions regarding my evolving condition.
How can caregivers and family members support someone living with Parkinson’s disease during their journey?
### Interview: Living with Parkinson’s Disease
**Interviewer:** Today, we’re joined by John, a brave individual who was diagnosed with Parkinson’s disease in August 2019. John, thank you for being here and sharing your experience with us.
**John:** Thank you for having me.
**Interviewer:** Let’s start with your initial diagnosis. How did you feel when you first learned that you had Parkinson’s?
**John:** It was a surreal moment. I had been experiencing some symptoms, but hearing the diagnosis made it all the more real. There’s a mix of fear, confusion, and a strange sort of relief in finally having an explanation for what was happening to my body.
**Interviewer:** You mentioned that you started on Sinemet, which contains Levodopa and Carbidopa. Can you tell us more about your experience with it?
**John:** Initially, it was effective, and I felt a notable improvement in my symptoms. However, I was aware that it might lose effectiveness after a few years, which I was hoping would not be the case for me.
**Interviewer:** As you approached the five-year mark, you felt optimistic, noting some improvements in your symptoms. Can you elaborate on that?
**John:** Yes, I thought I might be one of the fortunate patients who remained stable on the medication. Tremors in my left hand disappeared, and my disruptive REM Behavioral Disorder improved when I added melatonin to my routine. It felt like I was in a good place.
**Interviewer:** However, you also mentioned a change in your symptoms. What did you start to notice?
**John:** My wife pointed out some subtle but concerning signs. My fingers began to tap rhythmically and would often curl into a fist during the night. I realized that I could consciously unfurl them, but they’d revert to being clenched almost instantly. It was alarming.
**Interviewer:** It sounds like you were experiencing new challenges. Can you tell us about those?
**John:** Absolutely. I’ve been feeling perpetually exhausted, needing more sleep than I used to. My appetite has diminished, and I find myself disinterested in meals. Additionally, my left foot taps involuntarily, and my voice has become unreliable – it can shift from high-pitched to hoarse without warning.
**Interviewer:** That must be incredibly difficult to cope with. How are you managing these changes?
**John:** It’s a daily struggle, but I try to remain active in my care, from physical therapy to being mindful of my diet. I lean on my family, too, for support. It’s important to stay engaged and not let the disease isolate me.
**Interviewer:** Lastly, what message would you like to share with others who might be going through a similar situation?
**John:** It’s vital to remember that you’re not alone. The journey with Parkinson’s can be unpredictable, but seeking support, whether through community, therapy, or medication, can make a difference. Stay hopeful and proactive.
**Interviewer:** Thank you, John, for sharing your personal journey and insights. Your resilience is inspiring, and we wish you all the best in navigating the road ahead.
**John:** Thank you! It was a pleasure to share my story.
