Receiving a diagnosis of Parkinson's disease can come as a shock, especially when it’s completely unexpected. Stacy Rowland and her husband, Mike, experienced this firsthand in 2014. What started as a small tremor in Mike’s finger turned into a Parkinson’s diagnosis after a brief movement assessment at a doctor's appointment. As Stacy has learned over the years of caring for her husband, no Parkinson’s caregiver faces the disease alone. Understanding how Parkinson’s progresses, adapting to its challenges, and finding the proper support can significantly impact quality of life for everyone involved. Stacy’s story is one of resilience, joy, and finding purpose amidst a scary diagnosis - we can all learn from her approach to life’s challenges.
Understanding Parkinson's disease
Before we dive into Stacy and Mike’s story, let’s review the disease itself. Parkinson’s disease affects the nervous system and movement. It occurs when brain cells responsible for making dopamine, a chemical that controls movement, start dying or stop working. Without enough dopamine, symptoms appear and gradually worsen.
Common symptoms include:
- Shaking or tremors, often starting in the hands
- Slow movements (bradykinesia)
- Muscle stiffness
- Balance and posture difficulties
- Changes in speech and handwriting
However, each person's experience with Parkinson's is unique. Stacy often says, "If you've met one person with Parkinson's, you've met one person," highlighting that every journey is different. The uncertainty associated with Parkinson's can be particularly challenging. Stacy explains, "Your feet hit the floor in the morning, and you're not sure what you're up against. That's probably the hardest part."
Stacy’s journey into caregiving
After the diagnosis, Mike’s symptoms didn't significantly worsen, offering a brief sense of stability. However, Parkinson's progression can vary widely. Stacy and Mike chose to keep his diagnosis private, waiting months before telling their daughters and two years before sharing it publicly. However, opening up allowed them to build connections and find support from their community.
Stacy has learned that being a caregiver involves a delicate balance of offering assistance while respecting independence. Stacy candidly shares, "He doesn't want me to help; he wants to do it himself. Sometimes I have to quietly help so he doesn't have to." Maintaining this balance can be emotionally demanding - Stacy acknowledges, "I lose a little piece of him every day.”
While Stacy continually strives to find joy and positivity amidst the challenges, it is common for caregivers to experience burnout. This phenomenon is so common that it has been scientifically documented in research studies. Signs to watch for include:
- Persistent fatigue
- Irritability or mood swings
- Withdrawal from friends and family
- Loss of interest in activities you previously enjoyed
- Changes in sleep patterns
- Increased feelings of anxiety or depression
- Physical symptoms such as headaches or stomach issues
Recognizing these symptoms early helps caregivers seek essential support and take proactive steps to manage their well-being. A mental health professional can be a vital resource, but maintaining your mental health while caring for someone with Parkinson’s disease requires a robust support system.
Finding and building a Parkinson’s support system
Stacy firmly believes that having a support network is essential. "I honestly don't know how people do it without a support system," she says. Stacy describes her family as a "four-legged stool," with herself, Mike, and their two daughters providing mutual support. Their three granddaughters bring additional joy and motivation. She has also learned that caregivers need a safe space to process their emotions without burdening their loved ones, stating, "You want to shield them from some of that."
In addition to friends and family, a well-rounded support system includes healthcare professionals who can enhance the quality of life for both Parkinson's patients and their caregivers. Essential members of a Parkinson's healthcare team typically include:
- Neurologists: Specifically, movement disorder specialists, who diagnose and oversee the medical management of Parkinson’s disease.
- Physical therapists: Experts in movement science who help patients maintain and improve mobility, balance, strength, and coordination through tailored exercise programs.
- Occupational therapists: Assist patients with everyday tasks, providing strategies and adaptations for maintaining independence at home and in daily life.
- Speech therapists: Specialists who help manage speech and swallowing difficulties common in Parkinson's disease.
- Dietitians: Certified nutrition experts who can guide dietary choices to improve energy levels, manage medication effectiveness, and maintain overall health.
- Mental health professionals: Counselors or psychologists offer patients and caregivers emotional support, coping strategies, and mental health care.
Support groups and specialized caregiver programs provide opportunities to connect with others facing similar challenges, share experiences, and learn coping strategies. They are also a valuable reminder that no caregiver or Parkinson’s patient is ever walking through this journey alone. The Parkinson's Association of Alabama has been an invaluable resource for Stacy and many others. "Their resources for caregivers are vast—everything from initial diagnosis to support groups," Stacy explains. "They will take your hand and walk you through every process if that's what you need."
Finding purpose and joy in the journey
Stacy's advice for fellow caregivers is simple yet profound: "When your feet hit the floor in the morning, hit it with joy. You can find it throughout the day, even if the whole day isn't joyful."
Stacy and Mike have often found joy in meaningful action. While continuing her work as an interior designer, she co-founded Team Rowland with Mike, a nonprofit dedicated to Parkinson’s research and awareness. For the past nine years, they've organized fundraising bike rides in collaboration with the Parkinson’s Association of Alabama and the Michael J. Fox Foundation, raising over $1.6 million for Parkinson’s research.
Navigating Parkinson’s disease as a caregiver involves complex emotional and physical challenges. Stacy Rowland and her story show the importance of understanding the disease, maintaining emotional health, and proactively seeking support. Resources like the Parkinson's Association of Alabama, the Parkinson’s Foundation, and the Michael J. Fox Foundation can provide essential guidance and community connection. For additional resources and to find support groups near you, visit the Parkinson's Association of Alabama.
References
Aamodt, W. W., Kluger, B. M., Mirham, M., Job, A., Lettenberger, S. E., Mosley, P. E., & Seshadri, S. (2024). Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022. Journal of geriatric psychiatry and neurology, 37(2), 96–113. https://doi.org/10.1177/08919887231195219