You likely have heard about the importance of tackling Parkinson’s disease (PD) with a team approach. PD can encompass so many different symptoms and as such, many types of expertise can be helpful in combating those symptoms to ensure you achieve the maximum quality of life possible.
Additionally, your team may change over time as your disease evolves and different symptoms present themselves and become more or less prominent. This team approach can help you navigate your PD experience more proactively and thoroughly, while helping you feel more supported along the way.
How do you build a Parkinson’s care team?
Find a neurologist or primary care physician for diagnosis and coordinating treatment
The first member of your team will be the person who can diagnose and coordinate treatment of your Parkinson’s disease. Currently, this may be your primary care physician who may have diagnosed you and may be continuing to provide treatment.
Ideally, it is a neurologist who will have specialty training in brain diseases. There are also some neurologists who undergo extra training in PD and related disorders and these neurologists are referred to as Movement disorders specialists. This type of doctor typically focuses on PD in his/her practice and therefore has more expertise with managing the complex symptoms and treatments of the disease.
They are also more likely to be familiar with available clinical trials for PD. If possible, seek out the care of a movement disorders physician who can be an excellent first member of your healthcare team. If you need help finding a neurologist or movement disorders specialist near you, please contact APDA.
Who else should be on your care team?
There are so many different types of expertise available, it is not possible to engage them all. You and your neurologist or movement disorders physician will prioritize and select the members based on your current symptoms and your treatment goals.
Besides your movement disorders specialist or neurologist, your care team could include any/all of the following*:
Physical Therapists:
Physical therapists focus on improving balance, walking, and strength. You can access these services via a prescription from your neurologist. After a predetermined group of sessions is over, your physical therapist will typically give you exercises to continue doing on your own at home. You and your neurologist can decide together when it would make sense to undergo another course of physical therapy, based on new symptoms that might develop. (Note: Your medical insurance may cap how many physical therapy sessions you are allowed per year.) Even if no new symptoms develop, it is ideal to be evaluated by a physical therapist periodically so that any gait or balance issues that might be developing are addressed as early as possible.
The motor challenges of PD and their physical therapy treatments can be quite distinct from other diseases. This has led certain physical therapists to develop their expertise in PD, thereby offering more specialized care. If you are looking for physical therapy expertise that is specific to Parkinson’s disease in your area, you can contact APDA’s National Rehabilitation Resource Center for Parkinson Disease at Boston University. Their physical therapy experts can help connect you to PD physical therapists near you as well as answer your physical therapy related questions.
Occupational Therapists:
Occupational therapists or “OTs” focus on improving fine motor skills and promoting independent living. They offer a wide range of interventions that can be very useful to someone with PD. These services are also typically accessed via a prescription from your neurologist. Previous blogs have addressed some of these including driving evaluation, cognitive rehabilitation, alternative communication and home modifications. If you feel that your PD symptoms are interfering with and/or limiting your activities of daily living, ask your neurologist for an occupational therapy assessment.
Speech and Language Pathologists:
Speech and language pathologists (SLPs) focus on improving speech and swallowing difficulties. There are specific speech therapy techniques that have been developed to improve the speech patterns of people with PD who often have a low volume, monotonous voice. These techniques include the Lee Silverman Voice Technique LOUD® therapy and Parkinson’s Voice Project SPEAK OUT! ® Your neurologist can write a prescription for a course of this type of therapy and guide you to a speech therapist who knows these techniques.
Swallowing difficulties can be a major challenge as PD advances. Clues that this is developing include clearing the throat or coughing with eating, taking much longer to eat than previously, losing weight, and refusing certain foods. If swallowing difficulties are suspected, a speech and language pathologist first performs a swallow evaluation to determine the particular problem and then gives recommendations on a safe diet to eat. A course of swallow therapy can help improve a person’s swallow to make eating safer and more enjoyable.
Exercise Instructors:
Exercise instructors teach classes or work one-on-one with people with PD to enhance cardiovascular fitness, balance, or strength to reduce PD symptoms and enhance overall health.
There are many different types of exercise programs that are offered to people with PD. Some have been studied in the context of a clinical trial, but many have not. It is therefore not possible to know for certain which is the best exercise program to participate in. Therefore, consider the following when you assess an exercise program:
- Does the exercise program focus on one or more of the key elements of fitness that are important for PD – aerobic training, balance training and strength training? (If your exercise program of choice is missing one of those elements, you can supplement it in another class or with home exercises.)
- Is the instructor familiar with PD and is he/she conducting the class in a safe manner with a reasonable instructor-to-participant ratio? APDA offers a specialized PD training to help exercise instructors learn to work safely and effectively with people with PD
- Is the class enjoyable for you, and will you work hard at it? (If you don’t like the first one you try, give another one a shot!)
Rock Steady Boxing is a popular option for people with PD, which offers non-contact boxing that emphasizes balance and strength training. There are many dance, tai chi, yoga, and other movement classes that are designed specifically for people with PD. Mindful movement-based practices are also popular choices. APDA makes it easy to try many different types of fitness and movement classes right from your home – check out the Virtual Events Calendar for upcoming classes, or contact a local APDA Chapter to see what in-person classes are near you. You can also consult APDA’s Be Active & Beyond: Guide to Exercise and Wellness for People With Parkinson’s Disease for exercise tips and guideance.
Complementary Medicine Practitioners:
Other complementary medicine practitioners engage in techniques like massage and acupuncture that may help alleviate symptoms.
Neuropsychologists:
Neuropsychologists are mental health professionals who perform cognitive testing to assess cognitive function and may also provide counseling for depression, anxiety or other mental health concerns.
Social Workers:
Social workers offer a variety of skills including counseling for mental health issues and navigation of the health care system to ensure best health outcomes
Support Group Leaders:
Support groups provide a forum to discuss symptoms, fears and emotions related to PD with others who are facing similar challenges.
Primary care doctors:
Your primary care doctor or general practitioner will work with the neurologist to figure out which symptoms are related to PD and which are not, and to help manage some of the common non-motor symptoms of PD such as fatigue or pain.
Nurses:
Nurses or nurse practitioners work with the neurologist to provide optimal care and address PD in a holistic manner
Registered Dietitians:
Registered dietitians (especially those trained in PD) can provide guidance on diet and how it influences PD symptoms and treatments. A proper diet can impact your overall health, medication efficacy, and more.
Home health aides:
At some point, people with PD may need some assistance at home. It may be just for a few hours a week, or it could be daily help – it all depends on the individual. Home health aides interact with the person with PD very closely and can be a great source of information for the rest of the healthcare team about what strategies work and which do not work to improve quality of life!
Other specialists:
Urologists, gastroenterologists, psychiatrists, or other specialists work with the neurologist and primary care physician to address a non-motor symptom of PD that may be particularly challenging to treat such as abdominal pain or urinary incontinence
*There may be other specialists not included here that become valuable members of your care team. The list above includes some of the most common specialists for people with PD but is not meant to be an exhaustive list.
While this may seem like a long list, remember each person will have different needs for their unique situation and will benefit from a different mix of help and support from their healthcare team.
APDA can help you build your healthcare team
Your neurologist can often refer you to some of these other health care experts, but if you have trouble finding what you need, you can contact an APDA Information & Referral Center to help connect you with specialists and resources in your area. Our APDA Chapters are also a tremendous resource and can help introduce you to programs, support, and services that can help round out your healthcare team and treatment plan. (You can visit our Community page to see what APDA resources may be near you.)
When thinking about a healthcare team and a multi-disciplinary approach to your PD plan, you might find it interesting to learn more about palliative care. Many people misunderstand the term and associate it with end-of-life care, but palliative care focuses on maximizing quality of life and is actually something you can employ right from the start, when you are early in the PD journey.
Be your own advocate
If your doctor isn’t suggesting some of these other specialists or approaches, do not be afraid to ask about any or all of them. Everyone needs a little something different, so be sure to speak up and ask about adding other experts and modalities to your treatment plan.
Tips and Takeaways
- Parkinson’s disease is best treated with a team approach since there are numerous types of expertise that can help you maximize your quality of life
- Building your team may take time and may change over time
- Speak with your neurologist about connecting you with the appropriate health care professionals, or contact APDA at apda@apdaparkinson.org or 1-800-223-2732 for assistance