July 28th, 2014 – the day that left me traumatized by the separation from my beloved father. I still wonder, was it really because of his prolonged illness, or did fate simply write only 70 years in the calendar of his life? Just ten years before his demise, he noticed a slight involuntary tremor in his left arm. This gradually spread to his legs, and finally, at the age of 61, he was diagnosed with Parkinson’s disease. Despite his retirement, he chose to continue working, ignoring the signs of tremors, which then became quite frequent and a part of him. Parkinson’s made simple everyday tasks, like putting on clothes, doing up buttons, putting on shoes, tying laces, bathing, and eating, incredibly difficult. His list of difficult tasks kept growing. As an accounts manager, signing checks, answering phone calls, and writing emails were part of his job. As the days passed, these tasks became extremely cumbersome for him, and he was asked to resign due to this inefficiency. Sitting at home only made things worse, disrupting his mental peace. Nonetheless, he did find something to occupy his mind—learning computer operations and reading books helped keep him engaged. But the illness progressed further, making it difficult for him to remember and recall things. The only way for him to remember was to write them down in a notebook. Writing was tough, but he still managed to scribble something he could later decode. As time went on, he became silent and rarely spoke. Talking itself became a struggle. Whenever he spoke, it was as if he whispered. Suffering in silence, without appropriate support, the only caregiver at home was my mother. I cannot blame Parkinson’s for his death, but had I helped him manage this condition, he could have lived a better life than he did. What is Parkinson’s? Why my father, or anyone else? How can we manage it? Is this a permanent illness?
Without getting into the deeper science behind the disease, let me explain that Parkinson’s results from a slow destruction of neurons in the brain. These neurons produce a chemical called dopamine, extremely crucial for regular activity in the brain. Due to the loss of neurons, dopamine depletes and causes abnormal brain activity that manifests as signs and symptoms of Parkinson’s disease. There is no specific cause or reason for this neurodegenerative disorder, though recent research (Dorsey and Bloem, 2024) attributes to genetic and environmental factors. Age, exposure to harmful chemicals, and gender are contributing factors.
How You Can Support Your Loved Ones to Manage Parkinson’s
Based on experience with my father’s condition, I’d like to outline a few pointers, hoping they will be helpful. Regular medical consultations are a must, as is seeking support from a Parkinson’s support community.
Here are a few steps you could take:
- Keenly Observe the Signs and Symptoms
Parkinson’s affects everyone differently. The signs described in my father’s case may not necessarily appear in your loved ones. So, be a keen observer. Usually, it begins with slight involuntary tremors, sudden or gradual weight loss, low blood pressure, tiredness, pain in the joints or throughout the body, bladder issues (including constipation), saliva accumulation and drooling, difficulty swallowing food or drinking water, emotional changes like depression, sometimes hallucinations, memory issues, and a decrease in cognitive function. My father had difficulty maintaining proper posture and developed a hunchback. He rarely sat and often leaned forward. Take note of when these symptoms occur during the day. For example: Do they experience tremors in the morning, or do they reduce later? Does the drooling problem occur in the morning and go away later, perhaps due to medication? Observe these patterns carefully. - Regular Doctor Visits
Once your loved one is diagnosed with Parkinson’s, make it a routine to schedule doctor appointments either bi-monthly or as advised by the doctor. Discuss your observations regarding the symptoms mentioned above and any changes in their medications. Speak about any side effects or improvements that you have noticed. Always accompany your loved one to these appointments, and if possible, bring a friend or relative along. Briefly discuss the signs and symptoms, and understand how the disease is progressing and what precautionary or supportive measures you can take as a caregiver (Luckhaus et al., 2024). Ask the doctor for reference material on the disease to understand it better. Discuss the best possible treatment plan with minimal side effects. Inquire about dietary requirements and whether any supplements are needed. Remember, while the doctor can prescribe medication to manage the symptoms of Parkinson’s, these pills will not cure the disease. - Switching to Alternative Methods of Treatment
The biggest mistake in my father’s case was frequently switching between alternative treatments—moving from Allopathy to Homeopathy to Ayurveda, and sometimes continuing multiple treatments simultaneously. Each medical discipline has its own merits, and not one approach is superior to another. Based on my father’s experience, I believe that switching treatments only complicates things in the long run. Choose one treatment method, based on trust and belief, and stick with it. - Lifestyle Support at Home
Work out a balanced, healthy diet for your loved one suffering from Parkinson’s. Including fiber-rich foods can ease bowel movements, which can be troublesome in this disease. Incorporate green vegetables, fruits, and plenty of fluids into their diet. Increase the amount of omega-3 fatty acids by including relevant nuts and vegetables such as cabbage. Consult with the doctor about an appropriate diet plan. Consider setting up an exercise regimen, also in consultation with the doctor. Physiotherapy can help maintain a balanced posture. My father underwent physiotherapy for a brief period, and it did provide some relief. Keep a reminder diary for them, and help them take their medication on time. Assist your loved one with simple daily activities like dressing, bathing, combing their hair, or consider seeking help from an occupational therapist. - Communicate
Maintain effective communications with your loved ones. Discuss their feelings and ask how you can help. I did not spend enough time with my father and hardly spoke to him, and I still regret that. People with Parkinson’s tend to forget things quickly, so if they deny certain facts, remember that it is not deliberate but due to memory issues. Accept this, and do not argue. Converse regularly to keep them engaged and happy.
As the disease progresses, things will only worsen. Yes, medications and treatments can help manage symptoms, but they cannot cure the disease. Support and care (Hammarlund et al., 2024) are of the utmost importance. Seek out local support groups to get more information on Parkinson’s and help your loved ones live as happily as possible through this neurodegenerative disease.
Finding Positive Emotions and Building Supportive Relationships
Above all, positive emotions (Yao et al., 2024) of gratitude are important for both individuals with Parkinson’s disease and their caregivers. Many with Parkinson’s disease may feel overwhelmed by the daily effort required to deal with the condition. However, when a patient puts the focus on gratitude, even the smallest accomplishments-like finishing a simple task with support or enjoying a quiet moment-become significant. This shift in focus, from what has been lost to what is still possible, may offer hope and a sense of empowerment that are essential in maintaining emotional well-being on such an arduous journey. Caregivers also bear an emotional load of their own, in balancing physical care with their own stress and exhaustion. The practice of gratitude (Watkins et al., 2024) lifts that load.
Appreciating the meaningful moments, they share with their loved one and recognizing the worth of their own role empowers caregivers to tap into strength and resilience. Gratitude keeps them patient and compassionate, qualities so essential to nurturing a healthy caregiving relationship. Ultimately, gratitude and positive emotion are potent tools for the person with Parkinson’s as well as the caregiver. They allow space for emotional connection, reduce stress, and cultivate resilience. Embracing such feelings-especially in trying times-can offer a sense of peace, strength, and purpose, easing the burden of dealing with Parkinson’s together.
Leveraging the PERMA Model for the Creation of Patient-Centered Applications in Parkinson’s Care
The implantation of principles of positive psychology, such as the PERMA model, can support developers to create patient-centered applications for Parkinson’s, promoting features related to Positive Emotions, Engagement, Relationships, Meaning, and Accomplishment. Apps can help patients find meaning by tracking achievements and encouraging gratitude, while also engaging them in personalized activities and treatment plans. By building relationships with the care team through communication tools and promoting engagement with reminders and exercise plans, these apps can reduce emotional distress, increase patient self-efficacy, and contribute to a better quality of life for both patients and caregivers.
Now let us consider a hypothetical case: 65-year-old Sarah has just been diagnosed with Parkinson’s disease and barely masters everyday skills such as dressing and not forgetting to take her medication. By using this new, designed mobile app, Sarah can track her small successes, such as doing exercises or taking her medication at the right time of day, which creates a sense of mastery for her. It sends reminders for physical therapy, and even offers a gratitude journal that cultivates positive feelings. There is also a feature in the application that enables her daughter to check in with her, show support, and keep up to date with Sarah’s progress regarding her treatment plan. Consequently, Sarah feels more in command of her condition, and for her daughter, the app has been a gem in keeping connected and providing effective care.
References
- Dorsey, E.R., Bloem, B.R., 2024. Parkinson’s Disease Is Predominantly an Environmental Disease. J. Park. Dis. 14, 451–465. https://doi.org/10.3233/JPD-230357
- Hammarlund, C.S., Khalaf, A., Westergren, A., Hagell, P.L., Hagell, P., 2024. Facing and dealing with emotional turbulence: Living with newly diagnosed Parkinson’s disease. Scand. J. Caring Sci. 38, 701–710. https://doi.org/10.1111/scs.13258
- Luckhaus, J.L., Clareborn, A., Hägglund, M., Riggare, S., 2024. Balancing feeling ‘prepared’ without feeling ‘devoured’: A qualitative study of self‐care from the perspective of self‐empowered persons living with Parkinson’s disease in Sweden. Health Expect. 27, e14027. https://doi.org/10.1111/hex.14027
- Watkins, P., Emmons, R., Davis, D., Frederick, M., 2024. Thanks Be to God: Divine Gratitude and Its Relationship to Well-Being. Religions 15, 1246. https://doi.org/10.3390/rel15101246
- Yao, Y., Wang, C.-J., Yin, S.-Y., Xu, G., Cheng, Y.-F., Huang, Q.-Q., Jin, Y., 2024. Effects of positive psychology intervention based on the PERMA model on psychological status and quality of life in patients with Parkinson’s disease. Heliyon 10, e36902. https://doi.org/10.1016/j.heliyon.2024.e36902