Shedding Light: Parkinson’s Disease Awareness
As the morning sun filters through the curtains, another day begins. However, for those living with Parkinson’s disease, the simplest tasks can become daunting challenges, as each movement requires a concerted effort and unwavering determination. Waking up to the reality of diminished mobility is a sad reminder of the daily battles that lie ahead. The once effortless act of rising from bed now necessitates gripping onto nearby objects for support, a silent testament to the progressive nature of Parkinson’s disease.
With shaky hands and unsteady balance, even the morning ritual of brewing coffee transforms into quite an endeavor. The comforting aroma of freshly brewed coffee is overshadowed by the frustration of spilling more liquid onto the counter than into the waiting cup. Sitting down to savor that first sip, the lukewarm temperature fails to satisfy, prompting a return to the kitchen to heat the coffee in the microwave. Each step feels like a chore, but the desire for a moment of warmth and comfort propels forward, despite the obstacles. A craving for a simple accompaniment to the coffee leads to the decision to toast a slice of bread. What was once a routine action now unfolds as a series of challenges, from struggling to insert the bread into the toaster to grappling with a knife to spread butter on the toasted slice. Each movement tests patience and perseverance, as tremors threaten to undermine even the most basic tasks.
This morning ritual is a common occurrence for many individuals living with Parkinson’s disease, much like my late grandfather, Carl Siberski, who confronted the harsh realities of this condition. For years, he navigated the challenges that Parkinson’s disease presented, shedding light on the daily struggles of those affected by this complex neurological condition. Despite its prevalence, there is still a lack of understanding surrounding Parkinson’s disease. In honor of Carl’s journey and the countless others affected by Parkinson’s disease, April has been designated as Parkinson’s Disease Awareness Month. This month holds significance as it marks the birth month of James Parkinson, who first identified the symptoms of Parkinson’s disease over 200 years ago.
Understanding Parkinson’s Disease
So, what exactly is Parkinson’s disease? Parkinson’s disease is a neurological disorder that profoundly impacts every aspect of an individual’s life. At its core, it is a progressive condition characterized by the gradual degeneration of nerve cells in the brain, specifically those responsible for producing dopamine. This neurotransmitter plays a crucial role in facilitating smooth, coordinated muscle movements. However, as dopamine levels decline due to cell impairment or death, the symptoms of Parkinson’s disease progress, ranging from tremors, stiffness, and disruptions in balance and coordination.
Symptoms of Parkinson’s Disease
The symptoms vary from person to person and can manifest gradually over time. Depending on the individual, it can be challenging to distinguish whether the symptoms are related to Parkinson’s disease or simply to aging. For Carl, his struggle with Parkinson’s disease became pronounced in his senior years, leading those who were not often around him to assume it was merely his inability to keep up with life. However, for many, including his family, it was disheartening to witness his quality of life gradually decline.
Carl dedicated much of his life to traveling and physical activity. In retirement, he embarked on various international trips and became an avid cruise enthusiast, having enjoyed nearly 40 cruises in his lifetime. Before his adventures in travel, he spent decades teaching 4th grade while raising six children with his wife, Norita. Renowned for his active lifestyle, Carl participated in numerous marathons, ran daily, seized every opportunity to hike, tended to the largest garden in the neighborhood, and made home improvement activities seem effortless. Once known for giving rides on his tandem bicycle, he had to retire from that activity as Parkinson’s disease began to affect his mobility. Activities that once brought him pure happiness—such as gardening, painting, hiking, running, and ballroom dancing—became memories rather than daily pursuits.
Despite Carl’s adventurous life, Parkinson’s disease is indiscriminate. Unfortunately, it cannot be cured or prevented. While Carl’s active lifestyle was notable, it did not make him immune to the disease. Parkinson’s disease can affect anyone, regardless of their level of activity.
Some common symptoms of Parkinson’s disease include:
- Tremors: Involuntary shaking, usually beginning in the hands or fingers.
- Bradykinesia: Slowed movement and difficulty initiating voluntary movements.
- Muscle rigidity: Stiffness in the limbs or trunk can cause pain and impaired range of motion.
- Postural instability: Difficulty maintaining balance, leading to frequent falls.
- Bradyphrenia: Cognitive impairments like memory loss, difficulty concentrating, and mood changes.
- Speech and swallowing difficulties: Changes in speech patterns and trouble swallowing.
Speech and swallowing difficulties were the most challenging symptoms, significantly impacting Carl. Eating, one of life’s greatest joys, becomes a source of sadness when one cannot indulge fully. Speech and swallowing difficulties pose challenges in the battle against Parkinson’s disease, creating barriers to communication and proper nourishment. Carl remained alert and engaged in conversation in his final years yet struggled to articulate his thoughts. At his last Thanksgiving, our family sat around the table, and anticipation sparked in Carl’s eyes as he gestured eagerly toward the hors d’oeuvres—a silent plea for us to enjoy the culinary delights he could no longer fully savor.
Coping with Parkinson’s Disease
While Parkinson’s disease undoubtedly impacts quality of life, it by no means signals the end of life itself. Instead, it necessitates adjustments to continue living fully. For Carl, leaning on his support system became crucial, and he was fortunate to have a senior center in his community where he regularly engaged with his peers. The social aspect was vital for him to move forward, especially considering that many of his friends were also facing hardships with their health, allowing them to support each other through shared experiences.
In addition to his social network, Carl found solace in his faith. As a devout Catholic, attending daily mass at St. Rita’s church gave him spiritual strength. While physical hobbies had to be set aside, attending church remained a part of his routine. His bond with the church’s priest grew stronger, particularly during his final years, as the priest provided spiritual guidance, administering the Sacrament of the Anointing of the Sick and leading Carl’s funeral mass. The power of prayer and religion served as a significant coping mechanism for Carl and could similarly benefit others facing similar challenges.
Beyond faith, family support played a pivotal role in Carl’s journey. As a father of six and grandfather of eighteen, Carl relied on his family for assistance, particularly with mobility issues. While friendships were important, family support was equally crucial, especially when planning for end-of-life care and decisions.
Access to health care professionals was also essential. Their expertise guided Carl through the complexities of Parkinson’s disease. This underscores the importance of health care coverage, such as Medicare, which helps alleviate the financial burden associated with medical care. This is particularly relevant for Colorado Access members, who may be facing similar situations, and puts into perspective why it is essential for us to continue offering Medicaid.
In addition to these pillars of support, other coping strategies can aid individuals living with Parkinson’s disease, including:
- Education: Understanding the disease and its symptoms empowers individuals to make informed decisions about their treatment and lifestyle adjustments.
- Stay active (if possible): Engage in physical activity tailored to abilities and preferences, as exercise may help to improve mobility, mood, and overall quality of life for people with Parkinson’s disease.
- Embrace adaptive technologies: Assistive devices and technologies can enhance independence and facilitate daily tasks for individuals with Parkinson’s disease.
Toward the end of Carl’s journey with Parkinson’s disease, he entered hospice treatment and later peacefully passed away on June 18, 2017, at the age of 88. Throughout his struggles, Carl developed resilience from his daily battle against Parkinson’s disease. Each small victory, whether successfully making a cup of coffee or spreading butter on toast, represented a triumph over adversity.
As we reflect on Carl’s journey and the challenges he faced, let us commit to raising awareness and fostering empathy for those living with Parkinson’s disease. May his story serve as a reminder of resilience and strength, even in the face of the most daunting challenges. May we stand united in our efforts to support and uplift those impacted by Parkinson’s disease.
Sources
mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055