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Building a Parkinson’s Care Team – Introduction
Living with Parkinson’s disease presents a unique set of challenges. From managing motor symptoms like tremors and rigidity to navigating non-motor symptoms such as sleep disturbances and mood changes, the journey requires a comprehensive approach.
This is where a Parkinson’s care team becomes invaluable. A well-constructed care team can significantly improve quality of life by providing tailored support, managing symptoms effectively, and fostering independence.
This article will guide you through the process of building your own personalized Parkinson’s care team, ensuring you have the support you need every step of the way.
What is a Parkinson’s Care Team?
A Parkinson’s care team is a multidisciplinary group of healthcare professionals and caregivers who work together to provide comprehensive care for individuals with Parkinson’s disease.
This team-based approach recognizes the complexity of Parkinson’s and aims to address the diverse needs of those affected. By bringing together experts from various fields, a care team can provide a holistic and coordinated approach to managing the disease.
The Goals of a Parkinson’s Care Team
The primary objectives of a Parkinson’s care team include:
- Managing Symptoms: Effectively controlling motor and non-motor symptoms to improve daily functioning.
- Enhancing Mobility: Maintaining and improving physical mobility and balance.
- Fostering Independence: Promoting self-sufficiency in daily activities.
- Addressing Emotional Well-being: Providing support for mental health and emotional needs.
Why a Team-Based Approach is Essential
Parkinson’s disease affects individuals in various ways, which is why a collaborative approach is essential. A team-based model ensures that all aspects of the disease are addressed, preventing gaps in care and promoting better outcomes.
The collaboration between healthcare professionals and caregivers enables a more personalized and effective treatment plan.
To build your Parkinson’s Care Team, get my Building Your Parkinson’s Care Team Resource Guide and the Building Your Parkinson’s Care Team Supplemental Workbook, which was developed based on my 15 years living with Parkinson’s and building my care team as well as input from medical professionals and support specialist’s. Click the button below to get your copy and start building your Parkinson’s care Team.
Key Members of a Parkinson’s Care Team
Building a comprehensive care team involves identifying and engaging the right professionals and caregivers.
Neurologist or Movement Disorder Specialist
A neurologist, particularly a movement disorder specialist, is the cornerstone of a Parkinson’s care team. They are experts in diagnosing and treating Parkinson’s disease, managing medications, and monitoring disease progression.
A Movement Disorder Specialist is a neurologist who does and additional 1- 2 year Fellowship to become certified as a Movement Disorder Specialist. They work with multi-disciplinary teams including, physical, speech and occupational therapy, behavioral health specialists and nutritionists to help you get the care you need.
Their guidance is crucial for developing an effective treatment plan.
I’ve been seeing a Movement Disorder Specialist at the University of Maryland for the past 15 years and I am thankful for the care I receive. I have participated in a number of clinical studies which I learned about from my Movement Disorder specialist.
I highly recommend a Movement Disorder Specialist for your Parkinson’s Care because of the expertise and experience they provide as well as their interactions with multi-disciplinary teams.
For more information on Movement Disorder Specialist’s, read my article:
5 Authentic Benefits of Seeing A Movement Disorder Specialist
Physical, Occupational, and Speech Therapists
I have personally worked with all the specialists listed below. I have used physical therapy to help me improve my balance and gait issues, speech therapy to address my soft voice, which was making it hard for people to understand, occupational therapy to help me with my fine motor skills, and a nutritionist to help me with eating a healthy diet.
In addition, I have visited a mental health specialist to help with anxiety that is often associated with Parkinson’s. I have also seen a sleep specialist for sleep issues and a certified personal trainer to help design exercise programs to help with mobility, balance and flexibility.
It’s important to utilize these specialists as part of your care team to help you maximize your care and help you live your best life.
Listed below are the specialist and their roles.
- Physical Therapists:
- Physical Therapists (PTs) specialize in improving mobility, balance, and strength. For individuals with Parkinson’s, PTs address common challenges such as freezing, shuffling gait, and fall risk.
- They design exercises to improve movement and teach strategies to maintain independence and prevent injuries.
- Occupational Therapists:
- Occupational Therapists help you adapt to daily living tasks like dressing, cooking, and using assistive devices.
- They provide practical solutions to improve fine motor skills and recommend home modifications to ensure safety and accessibility.
- Speech Therapists:
- Speech-Language Pathologists (SLPs) address communication difficulties, swallowing issues, and voice projection. Parkinson’s can impact speech clarity and swallowing.
- SLPs provide exercises, such as Lee Silverman Voice Treatment (LSVT LOUD), to strengthen your voice and ensure safe swallowing.
Nutritionist or Dietitian
Dietitians can guide you in creating a Parkinson’s-friendly diet to manage symptoms, maintain energy levels, and optimize medication effectiveness.
Proper nutrition can also combat issues like constipation and weight fluctuations, which are common with Parkinson’s.
Mental Health Professionals
Parkinson’s not only impacts the body but also the mind. Anxiety, depression, and cognitive changes are common.
Psychologists, psychiatrists, and licensed counselors can provide therapy and medication to manage emotional well-being. Maintaining mental health is vital for overall quality of life.
To find specialist’s and support use the following resources listed below.
American Physical Therapy Association (APTA):
- https://www.apta.org/ – Use their “Find a PT” tool to locate physical therapists specializing in neurological conditions.
American Occupational Therapy Association (AOTA):
- https://www.aota.org/ – Use their tools to find occupational therapists.
American Speech-Language-Hearing Association (ASHA):
- https://www.asha.org/ – Find speech-language pathologists in your area.
Academy of Nutrition and Dietetics:
- https://www.eatright.org/ – Find registered dietitians.
American Psychological Association (APA):
- https://www.apa.org/ – Find psychologists and mental health professionals.
To help prepare for your doctor visits, read my article:
Parkinson’s Symptom Tracker: 4 Actionable Steps to Improve Communication with Your Doctor
Support Network: Family Members and Caregivers
Family members and caregivers provide invaluable emotional and practical support. Their involvement is crucial for maintaining a supportive and caring environment. They provide assistance in daily living, medication adherence, and emotional support.
How to Build Your Parkinson’s Care Team
Building your care team requires a proactive and organized approach.
Evaluating Your Needs and Priorities
Begin by assessing your specific needs and priorities based on symptom severity, lifestyle, and personal goals. Identify areas where you require the most support and tailor your team accordingly.
Finding the Right Experts
- Seek referrals from your neurologist or primary care physician.
- Utilize online directories from reputable organizations like the Parkinson’s Foundation.
- Connect with local Parkinson’s support groups for recommendations.
Communicating Effectively with Your Care Team
Maintain open and consistent communication with all team members. Share updates, concerns, and questions to ensure everyone is aligned and informed. Regular team meetings can facilitate coordinated care.
Adapting Your Care Team Over Time
Parkinson’s disease progresses differently for each individual, so your care team may need to evolve. Regularly reassess your needs and adjust your team accordingly.
Maximizing the Benefits of a Parkinson’s Care Team
To fully benefit from your care team, adopt a proactive and engaged approach.
Setting Goals Together
Collaboratively set specific, measurable, achievable, relevant, and time-bound (SMART) goals with your care team. This helps track progress and maintain focus.
Let’s look at applying the SMART Goal Framework to our Parkinson’s Care Team. Listed below are specific examples of setting SMART Goals.
Health: “Schedule an appointment with an MDS within 30 days.”
Tools: Appointment trackers, calendars.
Mobility: “Walk 15 minutes, five days a week, for one month.”
Tools: Step counters, exercise logs.
Emotional Well-being: “Attend one therapy session weekly for six weeks.”
Tools: Mood trackers, journals.
Social Activity: “Join a Parkinson’s support group and attend two meetings
next month.”
Tools: Group schedules.
Leveraging Parkinson’s Resources and Support Groups
Utilize resources from organizations like the Parkinson’s Foundation, participate in local support groups, and engage with online communities. These resources provide valuable information, support, and connection.
Parkinson’s Foundation
- Website: www.parkinson.org
- Resources: Helpline, webinars, educational resources, and local
chapters.
Michael J. Fox Foundation for Parkinson’s Research
- Website: www.michaeljfox.org
- Resources: Research updates, clinical trial information, and a Parkinson’s guide for
patients and caregivers.
Davis Phinney Foundation
- Website: www.davisphinneyfoundation.org
- Resources: Living well with Parkinson’s tools, exercise tips, and care
partner resources
American Parkinson Disease Association (APDA)
- Website: www.apdaparkinson.org
- Resources: Support groups, fitness classes, and educational programs.
Staying Informed and Engaged
Continuously educate yourself about Parkinson’s disease, treatment options, and care strategies. Actively participate in care decisions and advocate for your needs.
To build your Parkinson’s Care Team, get my Building Your Parkinson’s Care Team Resource Guide and the Building Your Parkinson’s Care Team Supplemental Workbook, which was developed based on my 15 years living with Parkinson’s and building my care team as well as input from medical professionals and support staff. Click the button below to get your copy and start building your Parkinson’s care Team.
Conclusion
Building a comprehensive Parkinson’s care team is essential for managing the complexities of the disease and improving quality of life. By assembling a team of dedicated professionals and caregivers, individuals with Parkinson’s can receive tailored support, manage symptoms effectively, and maintain independence.
Taking the first step towards building your personalized care team can make a significant difference in your journey with Parkinson’s disease. Remember, you are not alone, and a strong support network is key to navigating this path.
for additional free resources, visit my home page and to learn more about my personal journey with Parkinson’s visit my My Life page
About the Author:
I’m Chris Kustanbauter and I live in Red Lion, PA.,USA. I’ve been married to my wife Mary for 39 years. We have two adopted boxer dogs Duke and Katie. I am a podcaster hosting a weekly podcast – Live Parkinson’s – Live an Exceptional Life, I’m an author, blogger and YouTuber. My hobbies include playing the guitar, fly fishing and fly tying and gardening.
“Do I really need a whole team? Can’t my neurologist handle everything?”
While your neurologist is crucial for managing the medical aspects of Parkinson’s, a comprehensive care team addresses the diverse challenges of the disease. Parkinson’s affects not just movement, but also speech, swallowing, daily activities, nutrition, and mental health. A team including physical, occupational, and speech therapists, a nutritionist, and mental health professionals ensures that all these areas are addressed, leading to better overall management and quality of life. Your neurologist is the team leader, but they rely on the expertise of others to provide holistic care.
“How do I find qualified professionals for my Parkinson’s care team?”
Start by asking your neurologist for referrals, as they often work closely with other specialists. You can also utilize online directories from reputable organizations like the Parkinson’s Foundation, the American Physical Therapy Association (APTA), the American Occupational Therapy Association (AOTA), the American Speech-Language-Hearing Association (ASHA),1 and the Academy of Nutrition and Dietetics. Additionally, consider reaching out to local Parkinson’s support groups for recommendations and personal experiences. When choosing professionals, look for those with experience in Parkinson’s disease and a patient-centered approach. Don’t hesitate to interview potential team members to ensure they are a good fit for your needs
“How often should my care team communicate with each other and with me?”
Regular communication is vital for effective care coordination. Ideally, your care team should have a system in place for sharing information, whether through electronic health records, regular meetings, or email updates. You, as the patient, should also actively participate in this communication. Schedule regular check-ins with individual team members and consider organizing periodic team meetings to discuss your progress, address concerns, and adjust your care plan as needed. The frequency of communication will depend on your specific needs and the stage of your disease, but proactive and open communication is always encouraged.