Kate Fiorianti, Author at The Peterson Foundation for Parkinsons

Caring for the Caregiver: Recognizing and Addressing Burnout in Parkinson’s Care Partners

Posted on November 21, 2024 by Kate Fiorianti

Being a care partner for someone living with Parkinson’s disease is an act of love and dedication. From managing daily routines to navigating medical appointments and emotional support, the role requires tremendous time, energy, and resilience. However, amidst focusing on your loved one’s needs, it’s easy to lose sight of your own well-being. This can lead to care partner burnout, a state of physical, emotional, and mental exhaustion.

Burnout occurs when chronic stress goes unchecked. For Parkinson’s care partners, the stress often stems from the unpredictable progression of the disease, balancing caregiving with personal responsibilities, and navigating complex emotions like guilt or frustration.

Signs of burnout include:

Physical symptoms: Fatigue, headaches, or frequent illness.
Emotional exhaustion: Feelings of helplessness, anger, or irritability.
Mental strain: Difficulty concentrating or decision-making.
Behavioral changes: Withdrawing from friends, neglecting hobbies, or relying on unhealthy coping mechanisms like overeating or excessive alcohol use.
The Importance of Prioritizing Your Well-being

Taking care of yourself isn’t selfish—it’s essential. A healthy, rested care partner is better equipped to provide compassionate and effective support to their loved one.

Strategies to Prevent and Manage Burnout:

Build a Support Network: You don’t have to do it all alone.

Family and friends: Delegate tasks like grocery shopping or attending doctor appointments.
Support groups: Connecting with others in similar situations can provide emotional relief and practical advice. Organizations like the Parkinson’s Foundation offer care partner resources and communities.

Schedule Breaks

Respite care: Professional services can temporarily take over caregiving duties, giving you a chance to recharge.
Daily mini-breaks: Even a 15-minute walk or meditation session can make a difference.

Prioritize Your Health

Sleep and nutrition: Maintain consistent sleep patterns and eat balanced meals to sustain your energy.
Physical activity: Exercise releases endorphins, improving mood and reducing stress.
Routine medical checkups: Stay on top of your own health needs.

Acknowledge Your Emotions

It’s normal to feel overwhelmed. Journaling, talking to a trusted friend, or seeking therapy can help you process complex feelings.

Educate Yourself

Understanding Parkinson’s disease can help you manage caregiving more effectively. Knowledge about symptoms, treatments, and available resources can reduce uncertainty and empower you in your role.

You Are Not Alone

Caring for a loved one with Parkinson’s is a challenging journey, but you don’t have to walk it by yourself. The Peterson Foundation for Parkinson’s offers a Care Partners small group meeting for care partners to build a support system of other care partners. This is a safe place for Care Partners to share their experiences, struggles and successes.

This group meets the 2^nd Wednesday of every month at 10:00am at Franklin First United Methodist Church. For more information contact info@petersonforparkinsons.org.

2024 Navigating the Parkinson’s Path: Insights and Information on Improved Living

Posted on August 16, 2024 by Kate Fiorianti

The 2024 Navigating the Parkinson’s Path was a resounding success, bringing together experts, sponsors, and the community to explore groundbreaking advancements in Parkinson’s disease treatment and management. On Saturday, August 10 the Peterson Foundation for Parkinson’s welcomed over 180 members of the Middle Tennessee Parkinson’s Community to network and gain insights into living with Parkinson’s.

This event would not have been possible without the support of our many sponsors. We extend our heartfelt thanks to our presenting sponsor, Supernus, and to our other key sponsors: Acadia, Amneal Pharmaceuticals, Boston Scientific, Koyowa Kirin, Medtronic and Sorenson. A special thanks also goes to our community sponsors, Parkinson’s Foundation and Rock Steady Boxing, for their invaluable support.

Faye, Nutritionist: Dietary Strategies for Parkinson’s Management

Faye, a nutritionist who has lived with Parkinson’s for 14 years, shared valuable insights into how diet can complement medical therapy. She emphasized the importance of timing and composition of meals in relation to medication. For instance, consuming a low-protein snack one hour before medication can enhance its effectiveness by preventing competition with dietary proteins. Including vitamin C, such as lemon water, can also maximize medication absorption.

Faye’s personal experience with the MIND Diet underscored the significance of diet in managing Parkinson’s symptoms. She advised avoiding red meat, limiting daily sugar intake, and focusing on fresh vegetables and fruits. Regular physical activity, such as a 15-minute walk after meals, helps with food and medication absorption. Additionally, she recommended increasing vitamin B12 intake and avoiding artificial colorings and MSG.

Learn more about Faye by visiting her website at: https://glutenfreenutritionforlife.com/

Dr. Travis Hassell: Focused Ultrasound Therapy coming to Vanderbilt

Dr. Travis Hassell introduced an exciting new treatment option for tremors associated with Parkinson’s Disease and essential tremor: Focused Ultrasound Therapy. This innovative approach is now being offered at Vanderbilt University Medical Center with its first patient in August 2024. This method offers a non-invasive, incision-free procedure that uses MRI-guided focused ultrasound beams to create thermal lesions in targeted brain tissues. This method has demonstrated a significant 76.5% improvement in tremor severity over a three-year follow-up period.

The procedure, which is performed one side at a time, requires patients to remain awake to monitor their symptoms and make adjustments as needed. The technique is known for its precision, safety, and immediate results, with minimal invasive impact on cognitive functions. However, patients may experience temporary side effects such as headaches or tingling, which generally resolve within a few weeks. For those with bilateral symptoms, treatment is conducted on one side at a time, with the second side potentially treated after a nine-month interval.

Pros of Focused Ultrasound Therapy:

Non-invasive
Immediate results
Minimal impact on cognitive functions
Does not preclude future deep brain stimulation (DBS) treatments

Cons:

Permanent scar
Treatment is done one side at a time
Potential for balance issues, mild speech slurring, or local numbness
Higher side effects risk in patients with bilateral tremors

Ideal candidates include those with essential tremor or tremor-predominant Parkinson’s disease who prefer a less invasive, one-time treatment approach. For more information, visit Vanderbilt Health’s Advanced Movement Disorder Therapies.

Dr. Davis: Insights into Parkinson’s Disease Progression and Management

Dr. Davis provided a comprehensive overview of Parkinson’s disease, addressing common questions and concerns. He discussed the typical progression of the disease, noting that while initial responses to medication are usually stable for the first five years, motor fluctuations and balance issues often arise as the disease progresses. The average life expectancy for individuals with Parkinson’s is around 81 years, with the disease potentially reducing life expectancy by 1-2 years.

Dr. Davis emphasized that, despite extensive research, no medication currently approved globally has been shown to slow Parkinson’s progression definitively. However, regular exercise, managing co-morbidities, and adhering to a well-balanced diet can help manage symptoms and improve quality of life. He also highlighted the Hoehn and Yahr stages of Parkinson’s and the different types of Parkinson’s, including early onset, tremor-predominant, and atypical forms.

Conclusion

The 2024 EXPO highlighted significant advancements and practical advice for managing Parkinson’s Disease. With groundbreaking treatments like Focused Ultrasound Therapy and expert insights into disease progression and dietary management, attendees were left with a wealth of knowledge and hope. Thank you to all our sponsors, speakers, and attendees for making this event a success. We look forward to continued progress and innovation in the fight against Parkinson’s disease.

For more information on the latest treatments and management strategies, visit petersonforparkinsons.org and follow us on Facebook at PetersonforParkinsons.

Understanding and Managing Cognitive Health in Parkinson’s Disease

Posted on June 11, 2024 by Kate Fiorianti

When it comes to Parkinson’s Disease (PD), understanding and managing cognitive health is crucial for maintaining quality of life. During our recent Empowering Minds: Parkinson’s Mental Wellness for Patients, Families and Caregivers, Dr. Kaltra Dhima from Vanderbilt Medical Center, alongside MyLiveability Occupational Therapists Dr. Carlene Johnson OTD/OTR/L and Tori Vik shed light on the intricacies of cognition in PD and offered valuable strategies for maximizing long-term brain health.

What is Cognition?

Cognition, or “thinking,” encompasses various domains essential for daily functioning, including

memory
attention
thinking speed
language
visuospatial function
executive function

Cognitive decline can vary significantly, ranging from mild to severe.

No cognitive decline indicates no deviation from the baseline, which is normal for age.
Mild Cognitive Impairment (MCI) involves cognitive decline from baseline, beyond normal aging, with no significant impact on daily tasks.
Dementia, or Major Neurocognitive Disorder, signifies significant cognitive decline from baseline, affecting the ability to perform daily tasks independently.

Causes and Symptoms of Cognitive Changes

Cognitive changes in PD can be attributed to several factors. Changes in dopamine levels can cause mild cognitive changes, while the same brain changes responsible for motor symptoms also impact cognition. The presence of Lewy bodies is linked to significant cognitive changes and dementia. Additionally, stress, medications, and unmanaged depression can exacerbate cognitive issues.

Specific cognitive challenges in PD include difficulties with attention, such as multitasking, shifting focus, and completing complex tasks. Speed of mental processing slows down, resulting in delayed verbal responses and increased time to complete tasks. Executive functioning problems affect planning, task completion, and mental flexibility. Memory issues present challenges with routine tasks, recalling memories, and managing finances. Language changes involve struggles with word-finding, speaking under stress, and comprehension. Visuospatial difficulties include problems with depth perception and navigating in low light or complex environments.

Proactive Health Management

Engage with healthcare providers to address cognitive health effectively. Reviewing medications for their impact on cognitive function, such as sedatives, antihistamines, and opiates, is essential. Lab tests to check for deficiencies and health risks like B12, thiamine, and thyroid function are important. Managing risk factors, including blood pressure, cholesterol, diabetes, and kidney/liver health, is crucial. Addressing sleep apnea symptoms like breathing pauses, snoring, and daytime sleepiness can prevent further complications.

Early and accurate diagnosis is crucial for effective management. Testing options include cognitive screening, a quick assessment lasting a few minutes, and a comprehensive neuropsychological evaluation, which takes 2-5 hours and involves interviews, standardized tests, and feedback sessions to identify causes and provide recommendations.

Research shows that newly diagnosed PD patients are about twice as likely to develop MCI. Within three to five years post-diagnosis, 20% to 57% of PD patients develop MCI. Additionally, 30% of PD patients may develop dementia at any given point, with the cumulative prevalence rising to over 75% after 8-10 years, and up to 83% after 20 years.

Lifestyle Modifications

Adopting lifestyle modifications can significantly impact cognitive health. Moderate alcohol consumption, avoiding smoking and substances, and following a healthy diet such as the Mediterranean or MIND diet are recommended. Staying physically active and engaging in cognitive and social activities, can help maintain cognitive function.

Managing Apathy and Anxiety

Low motivation, or apathy, is common in PD. Creating a daily schedule and setting weekly goals for activities provide structure. Focusing on small tasks and encouraging participation in hobbies and exercise are effective strategies. Ensuring adequate sleep and engaging in enjoyable physical activities are crucial for overall well-being. Anxiety in PD is manageable with techniques such as deep breathing, shifting focus, thinking grateful thoughts, repeating positive affirmations, and engaging the five senses. Progressive relaxation, which involves tensing and relaxing different muscle groups, can also release tension.

Care Partner Strategies

Care partners play a crucial role in managing cognitive changes in PD. Providing prompts and reminders, such as using sticky notes and labels around the home, can be helpful. Offering help only when needed in mild to moderate stages and assisting with medication management are important strategies. Consistency in keeping frequently used items in the same place and exercising patience by allowing time for responses or word-finding can make a significant difference.

By understanding and addressing cognitive changes, individuals with Parkinson’s Disease can take proactive steps to maximize their long-term brain health and maintain their quality of life.

Resources

Parkinson’s Disease & Cognition: Maximizing Long-Term Brain Health (Dr Kaltra Dhima’s Presentation)

Empowering Minds: June 5, 2024 Webinar Recording

MyLiveability Handouts

Motor Impairments

Non-Motor Impairments

Empowering Minds: Parkinson’s Mental Wellness for Patients, Caregivers and Families.

Early Intervention for Depression and Anxiety:

Quality of Life and Depression:

Physical Exercise and Brain Health:

The MIND Diet:

Importance of Sleep:

Understanding the Benefits

Unveiling the Science

Embracing a Holistic Approach

Embarking on the Journey

Conclusion

Resources