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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.

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.

 

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

The Peterson Foundation for Parkinson’s recently hosted our inaugural Empowering Minds, sponsored by the Hirsch Legacy Fund. This event aimed to shed light on the multifaceted nature of Parkinson’s Disease, moving beyond the commonly known “movement disorder” stereotype and emphasizing its neurological complexity.

Dr. Pontone, a renowned doctor in the field of neurology, provided valuable insights during his presentation, challenging the prevailing perception of Parkinson’s Disease. He highlighted key takeaways that have the potential to change the way we approach this condition.

Early Intervention for Depression and Anxiety:

There is a correlation between depression symptoms and the onset of Parkinson’s Disease long before motor symptoms appear. Early diagnosis and treatment of depression and anxiety can potentially delay or even prevent the development of motor symptoms.

Quality of Life and Depression:

The impact of depression and anxiety have the greatest impact on health for individuals with Parkinson’s Disease even more than movement challenges.  Studies have shown that treating depression is one of the most significant ways to decrease disability and improve quality of life! This underscores the importance of addressing mental health as a crucial aspect of Parkinson’s care.

Physical Exercise and Brain Health:

The best evidence for protecting brain function in Parkinson’s Disease and Alzheimer’s Dementia is aerobic exercise. This emphasizes the importance of incorporating exercise into daily routines.

The MIND Diet:

The MIND Diet is the best nutritional approach for individuals with Parkinson’s Disease. You may wish to refer to the PFP blog on The Mind Diet.

Social Interaction as a Prescription:

Social interaction is an essential part of Parkinson’s Disease management.  Dr. Pontone prescribes this for his patients to encourage them to socialize, connect and get involved.

Importance of Sleep:

Sleep is as important as diet and exercise.  Develop a bedtime routine and try not to take naps during the day. For suggestions to improve your sleep Dr. Pontone recommended the book Why We Sleep by Dr. Walker.

Another esteemed medical expert, Dr. Daniel Claassen from Vanderbilt Medical University shared a study illustrating the positive effects of physical activity, particularly Rock Steady Boxing, on sleep quality. This study involved participants from PFP support groups, highlighting the potential benefits of such programs for Parkinson’s patients.

Lastly, during the event, Dr. Pontone and Dr. Claassen addressed questions on topics like nightmares associated with antidepressants and the demoralizing feelings associated with Parkinson’s Disease, providing valuable insights into these challenging aspects of the condition.

 

Parkinson’s disease (PD) is a complex neurodegenerative disorder that affects millions worldwide. However, emerging literature is shedding light on a powerful ally in the battle against PD: strength training. Not only does this form of exercise improve physical strength and endurance, but it also holds the potential to make dopamine utilization more efficient, alleviate symptoms, and potentially slow down the progression of the disease. In this article, we delve into the benefits of strength training specifically tailored for PD, and explore ways to make this journey safe, enjoyable, and transformative.

Understanding the Benefits

The advantages of strength training extend far beyond bulging biceps. Research has shown that individuals diagnosed with PD often experience a decline in gross muscular strength, particularly in areas like the back and hip extensors. This weakness can be attributed to the postural changes that commonly occur as the disease advances. The tendency to hunch shoulders and lean forward weakens postural muscles, compromising balance and increasing the risk of falls.

This is where strength training steps in as a formidable solution. By engaging in regular strength training exercises, individuals with PD can bolster their strength, stability, and confidence. The exercises not only counteract the muscular weakness associated with PD but also promote proper posture, thereby mitigating the risk of falls. Additionally, strength training helps improve dynamic balance and cognitive functioning, contributing to an overall enhanced quality of life.

Unveiling the Science

The science behind the efficacy of strength training for PD is multifaceted. One intriguing aspect is its impact on dopamine metabolism. Dopamine, a neurotransmitter critical for movement control, is often deficient in individuals with PD. Engaging in strength training appears to make dopamine utilization in the brain more efficient, potentially leading to a reduction in motor symptoms.

Moreover, strength training has been associated with anti-inflammatory effects, promoting a healthier neuroenvironment. It also facilitates increased brain connectivity, which can counteract the neural degeneration characteristic of PD. Among various types of exercise, weight training stands out as particularly beneficial for individuals with PD, thanks to its potential to address muscle weakness and posture imbalances.

Embracing a Holistic Approach

While strength training takes center stage, it’s important to recognize that a comprehensive exercise regimen can yield even greater benefits for those with PD. Incorporating a variety of exercises ensures a holistic approach to managing the disease. Resistance training, cycling, aqua aerobics, dance, and specialized programs like Rock Steady Boxing can all play a crucial role in maintaining physical and cognitive well-being.

Embarking on the Journey

For those considering adding strength training to their PD management plan, there are numerous avenues to explore. Personal training, guided by fitness professionals experienced in working with PD patients, offers tailored guidance and supervision. Physical therapy can provide targeted exercises to address specific needs, while group training environments foster camaraderie and motivation.

The key is to start gradually and progress at a pace that suits your individual abilities. Always consult with your healthcare provider before beginning any new exercise regimen, especially if you have existing health conditions.

Conclusion

The realm of exercise, particularly strength training, holds remarkable potential for individuals living with Parkinson’s disease. By actively engaging in regular strength training exercises, individuals can not only increase their physical strength and stability but also potentially enhance dopamine utilization, alleviate symptoms, and slow disease progression. It’s a journey that intertwines science, perseverance, and hope, promising a brighter horizon for those navigating the challenges of Parkinson’s disease.

Resources

Northwestern Medicine: Feinberg School of Medicine

National Library of Medicine

American Academy of Neurology

 

On Saturday, August 12 the Peterson Foundation for Parkinson’s welcomed nearly 150 members of the Middle Tennessee Parkinson’s community at the Gordon Jewish Community Center in Nashville for the Foundation’s 4^th Annual Navigating the Parkinson’s Path, presented by Supernus. This day was a true testament to the power of community, bringing together individuals with Parkinson’s, caregivers, advocates, and experts.

The event started with a welcome from Founder, Brent Peterson and Board Member, Jay Lowenthal. They recognized and thanked all the PFP Board members and support group members in attendance. They acknowledged all of our sponsors, of whom without their support this event would not have been possible.

Dr. Jill M. Giordano Farmer began the day by discussing a comprehensive approach to treatment as Parkinson’s progresses. Dr. Farmer stressed that nothing happens in isolation within the brain, making a mixture of medicines essential for a holistic approach. She also highlighted the significance of social engagement and exercise, which impacts both motor and non-motor components of Parkinson’s disease.

In addition to medication, social engagement and exercise, Dr. Farmer stated hydration and proper nutrition is crucial for managing day-to-day symptoms, energy absorption of medications, and reducing constipation.

After a brief Rock Steady Boxing exercise break, facilitated by Colleen Bridges of Bridges for Parkinson’s, Dr. Thomas Davis provided valuable insights into disease modification and the role of alpha-synuclein in Parkinson’s disease. Disease-modifying therapies aim to slow the progression of Parkinson’s, providing hope for better long-term outcomes. Understanding alpha-synuclein and its contribution to the disease has led to new therapies and trials aimed at reducing its impact.

Following Dr. Davis’s presentation, Carrie Friddell from Peterson Voices led the attendees in vocal exercises and provided information on the benefits of vocal health for individuals living with Parkinson’s. At this time, attendees enjoyed some time to mingle with our sponsors and learn about the resources available to the Parkinson’s Community within Middle Tennessee.

The final presenter for the day was Dr. Daniel M. Corcos who shared the incredible benefits of resistance training, particularly its impact on individuals with Parkinson’s. While any form of exercise is beneficial, according to research studies weight training stands out as more advantageous, leading to a 7-point improvement in strength after a 24-month study. Additionally, resistance training enhances cognitive outcomes, preserves brain matter, and improves balance, posture, and gait.

As we continue this journey together, we encourage you to explore the resources shared during the event. Stay informed, engaged, and empowered, every step you take contributes to a better life with Parkinson’s.

Thank you for being part of our event, and we look forward to further sharing valuable insights to support our Parkinson’s community. Let’s navigate this path together, armed with knowledge, support, and a shared commitment to improved living.

RESOURCES FROM EVENT:

Jill Farmer Bio

Dr. Thomas Davis Bio 

Dr. Daniel Corcos Bio

Clinical Research Trials for Parkinsons

Can Exercise Slow Parkinson’s Disease Progression? with Daniel Corcos, PhD

Click here to view pictures from the event on our PFP Facebook Page

Here at PFP we are passionate about providing a safe and nurturing space for individuals affected by Parkinson’s disease, and I would like to extend a warm invitation to you to join our Women’s with Parkinson’s Support Group.

We understand that living with Parkinson’s disease can present unique challenges and experiences for women. By coming together as a community of women facing similar journeys, we can foster an environment of understanding, support, and empowerment. Our support group aims to create a space where women can share their vents, concerns, triumphs, and advice, thus building meaningful connections and finding solace in the company of others who truly understand.

Here are some reasons why our Women’s w/ Parkinson’s Support Group can be an invaluable resource for you:

Tailored Support: The group is specifically designed to address the needs and experiences of women with Parkinson’s disease. We believe that by focusing on the unique aspects of women’s experiences, we can provide more targeted support and guidance.

Emotional Connection: Sharing your vents and concerns in a safe and empathetic environment can be immensely therapeutic. Our group provides a compassionate space where you can openly express your feelings and be met with understanding and encouragement.

Empowerment and Education: We regularly organize informative sessions and guest speaker events where we explore topics related to Parkinson’s disease management, research updates, and lifestyle strategies. These sessions are an opportunity to expand your knowledge, gain valuable insights, and feel empowered to take control of your Parkinson’s journey.

Building connections with others who are walking a similar path can be profoundly impactful. Our support group offers the chance to forge meaningful friendships, share advice, and create a strong network of support that extends beyond our meetings.

We warmly encourage you to attend our upcoming support group meeting via zoom on Thursday, July 20 at 10:00am. If you have any concerns or questions beforehand, please don’t hesitate to reach out to us via email or phone, which I will provide at the end of this message.

 

Meet Roxanne!

Originally from Livingston, TN, Roxanne and her husband Gary currently reside in Cookeville, TN.

Roxanne is one of the founding members of the Cookeville Support Group and continues to be active, not only in her local group, but participates in several programs and events with PFP.

Here is what Roxanne has to say about her Parkinson’s journey.

I was diagnosed with Parkinson’s in May of 2011. Frankly, I didn’t know what Parkinson’s was, but I was already a very active person. When I had PD about 6 yrs., a friend in Franklin living with Parkinson’s, told me to look at the groups on Facebook. What information!!  I started going to physical therapy (PT) and I soon realized there were no resources for individuals living with PD in this area. I am very much a people person, so at the urging of my PT, I formed the Parkinson’s Support Group of Cookeville & Surrounding. I covered six counties. The Director of the Senior Citizens Center walked in one day, and said she had a room. I was able to form a Rock Steady Boxing Program and the membership grew quickly. Not only was I helping people, but I was having a wonderful time. I thought – Who was this woman!?

At this time I joined the PFP, and we became the PFP Support Group of Cookeville. The PFP introduced me to a Parkinson’s world that I had no idea existed. I made many, many new friends. When I asked what I should do, I was told ” Go do what you do!!” I don’t know what it was either, but ” My pleasure! ” When there were 65 people attending, the PFP came and formed a Steering Committee for the group. I decided to take a step back from leadership became greeter, and mentor.

We are now over 3 years old. I look back and think ” How on earth did I do that!?”. I think it was a God thing.

I did something that should be an inspiration to everyone. Just say ” Yes I Can”.