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The Importance of Building Care Teams


In addition to seeking out a General Neurologist or Movement Disorder Specialist from your Primary Care Physician, you may be referred to several specialists throughout your journey with Parkinson’s for additional symptom management. Below is an overview of the specialists you may build into your care team. Regardless of who is on your care team, it is important to communicate clearly and transparently with all professionals on your care journey.


​It is up to you and your care partner to make sure that every physician you see is clear about the specific treatment path and medications you take for your Parkinson’s.

As people living with Parkinson's or care partners of those living with Parkinson's, we must be our own advocates - keeping all moving parts finely tuned and connected. Critically important to your journey is your circle of care which also includes your care partner, family, friends, spiritual advisor, or chaplain - but most importantly, YOU!


You

First and foremost, you are the most critical member of your care team. By choosing to be an active participant in how you manage Parkinson’s, you can become engaged and empowered to get your best results. But you don't have to go this alone. Involving your family and friends is also critical in the PD journey.


Care Partner

Adapting to life with Parkinson's should be a partnership between the person with PD and hopefully at least one other person. Care partners are those who walk alongside you, providing needed care and support throughout your Parkinson's journey. This can be physical (giving you an arm to lean on when you put on your socks,) emotional (listening to your fears and brainstorming ideas) and logistical matters (attending doctor appointments, driving, and running errands.) Often a care partner is a romantic partner, spouse, or an adult child, but it can also be a friend, sibling, grandchild, professional or another trusted person in your life. You may even have several care partners who take on different roles. In some instances, not everyone has someone in their lives who would naturally become a primary care partner, and others may have a partner who is unwilling or unable to provide this care. Take the opportunity to talk with those in your life about their comfort, abilities, and feelings related to care roles in PD.


Family and Friends

Your family members are also living with Parkinson's and will be key partners throughout your journey. They can work with you to assemble the rest of your care team and be the record keeper of therapies and outcomes. Keeping a journal and keeping your loved ones in the know of your journey will greatly benefit you. Look to your friends and community as sources of healthy social connectivity and support.


Spiritual Advisor / Chaplain

If faith is part of your life, a pastor, chaplain, rabbi, or other spiritual advisor can help you find peace, discover meaning, and accept life changes within the comfort and context of your beliefs. Whether within the construct of traditional religions or through other forms of spiritual expression, many people with Parkinson's rely on these advisors to provide the support and hope they need to embrace the future.


Nurses

Nurses are critical team members and can be strong liaisons between hospitals, medical offices, and the community -- helping to create and maintain an integrated approach to care. For many people, nurses are the first line of access and can address many health issues that arise. If your question or concern is a problem they cannot solve, they know who on the team can. They can also educate people living with Parkinson's and their families about medication schedules, care team members, and what to expect throughout a Parkinson's journey.


Neuropsychologist

Neuropsychologists specialize in the relationship between behavior and brain function. Cognitive impairment and behavioral complications such as depression, anxiety, and apathy can be some of the earliest symptoms people with Parkinson's notice, often before they even get an official diagnosis. Most people with Parkinson's will experience these issues at some point. If you do, a great first step is to get evaluated by a neuropsychologist who specializes in neurological disorders. They can assess your thinking skills, including memory, attention, reaction time, language, and visual perception. They will also evaluate your emotional functioning. They will then combine your results with the rest of your medical record to develop a diagnosis and recommendations for improving your quality of life. One of the benefits of getting an evaluation like this is that you will see how your Parkinson's is progressing so that you can act quickly to manage your symptoms.

Social Worker, Counselor, Therapist or Psychologist

Professionals who focus with emotional health and well-being will be beneficial throughout your Parkinson's journey. Counselors, social workers, therapists, and psychologists are trained to assess emotional difficulties and work with you to promote good mental health. They can help you cope and stay positive. They can also help you manage the stress that can make Parkinson's symptoms worse, causing additional strain on you and your family. They serve as guides, helping you to respond with resilience to changes you hadn't anticipated.


Psychiatrist

Psychiatrists are physicians who specialize in mental health. They are qualified to assess both the psychological and physical aspects of psychological problems and prescribe medication. If you experience emotional symptoms such as anxiety, depression, or apathy, a psychiatrist can work with you to adjust your medication regimen in ways that can help.


Physical Therapist

Physical Therapy (PT) can help you improve strength, flexibility, and mobility, and it can also decrease stiffness and pain related to Parkinson's. Many people with Parkinson's don't realize how valuable a physical therapist (PT) can be in the early days (especially if you find one who specializes in working with people with neurological disorders); however, those who have worked with them consistently have received tremendous value from doing so, both physically and emotionally.

When you begin seeing a PT early after your diagnosis, they can teach you exercises that address current weaknesses, which will allow you to stay stronger and mobile for longer. If you are new to a daily exercise routine, your PT can offer tailored exercises to build stamina and strength. They can help you put together a program based on your likes. Also, by getting an early assessment, your PT will see how your Parkinson's is progressing over time and recommend exercises to address areas that may be getting weaker.


Occupational Therapist

Occupational therapy (OT) is the only profession that helps people across the lifespan to do things they want to do through therapeutic activities. Occupational therapists (OTs) enable people of all ages to live life to its fullest by helping them promote health and prevent or live better with injury, illness, or disability.

Occupational therapy interventions focus on adapting the environment through modifications, modifying the task, teaching a skill, or educating the person, care partner, and family to increase participation and perform daily activities. Occupational therapy is practical and customizable, focusing primarily on activities that are important and meaningful to you.


Speech-Language Pathologist

As Parkinson's progresses, some people find it difficult to speak loudly, pronounce words clearly, speak fluidly, and show facial expression. However, it is possible to improve all these symptoms by working with a speech therapist or speech-language pathologist (SLP). These rehabilitative professionals can also help you with eating, swallowing issues, saliva management, dry mouth, drool, and more.


Pharmacist

If you see a pharmacist regularly (instead of ordering medications through an online service,) they can be a valuable part of your care team. Because they will know all the medications you take - those related to Parkinson's and those that aren't - your pharmacist will be on the lookout for medication interactions that your primary care physician may not always be aware of. Whenever you are prescribed a new medicine, be sure to ask your pharmacist if there's anything you need to know about how it might interact with other meds you are taking. Pharmacists can also advise about crushing pills, splitting doses, and easy-open bottles.


Dieticians and Nutritionists

When it comes to a nutritional plan, what works for you may not work for someone else. And for every article (peer-reviewed or otherwise) on why diet X is the best, there is another that claims Y is better. To find the best nutritional strategy for you, see a registered dietician (RD) specializing in working with people with Parkinson's or other neurological disorders. RD's are usually the most qualified health professionals on nutrition and dietetics, unless your primary care physician, neurologist, or MDS specializes in that field.


Dentist

Regular dental exams are an important part of preventative care for everyone, and for a person with Parkinson's, good dental care is even more critical. That's because Parkinson's can impact the mouth and jaw and make dental care more challenging. Regular dental exams and cleanings are important to ensure you have healthy teeth and gums. At these appointments, often scheduled every six months, your dentist can check for cavities, plaque, tartar, and gum disease to ensure that you are properly caring for your oral health.


Dermatologist

Melanoma, one type of skin cancer, has been consistently linked to Parkinson's. Because melanoma is treatable if caught early but can be dangerous if not detected until the later stages, it's crucial that people with Parkinson's focus on skin protection and regular skin cancer screenings. During these screenings, a dermatologist will check your skin for moles, birthmarks, or other marks that are unusual in color, size, shape, or texture. If skin cancer is suspected after a screening, your physician will perform a biopsy to remove cells from the suspicious mark on your skin. A pathologist will then study the cells or tissue under a microscope to check for damage or disease. Dermatologists can also prescribe lotions or medications that may help with some skin conditions related to Parkinson's or that are side effects from medications.


Eye Care Professionals

Regular eye exams with an eye care professional should be part of your preventative care routine. These exams are essential for screening for eye diseases and preserving your vision. There are several different types of eye physicians: ophthalmologists, medical physicians who have completed four years of medical school followed by four years of residency training in ophthalmology; optometrists, healthcare providers who complete physician training in optometry but who have not attended medical school; and neuro-ophthalmologists, who are neurologists or ophthalmologists with expertise in visual symptoms of neurologic disease.

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Sources:

Davis Phinney Foundation for Parkinson's. Every Victory Counts, "Manual." Your Go-To Resource of Essential Information and Inspiration for Living Well with Parkinson's. Sixth Edition. 2021.


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