Implementing the Team Approach
to Treating Parkinson’s

Every person with Parkinson’s disease (PD) is different – not only in how he or she is affected by the disease, but also in how he or she reacts to the life changes that are associated with living with PD. For this reason, treatment of Parkinson’s should focus not just on the disease but also on the patient’s needs and preferences. While a single physician may be overwhelmed by the complexity involved in treating the many symptoms of PD, a team approach can foster holistic care, drawing on the strengths of individual team members.

The following FAQs should answer your questions about the value of comprehensive care.
 

A comprehensive care approach goes beyond treating the movement and non-movement related symptoms of PD. It aims to work “outside the box” to reduce disability, maintain independence and enhance safety. Members of the treatment team concentrate on all aspects of the patient’s needs: movement, ability to perform daily activities, communication and social needs, success in relationships, self awareness, emotional health, wellness and even hobbies. Counseling, education and support are important functions of the team, and comprehensive care is enhanced when the patient takes an active role in his or her care. This combination of individual initiative and group concern can strengthen hope, successfully address issues related to loss and life changes and aid adjustment to daily frustrations and new challenges.

The structure and orientation of a comprehensive care team may vary depending on the resources that are available, and its members may need to be changed as the disease progresses. One thing is certain: central to the success of treatment focused on living well with PD is active participation by the person with Parkinson’s. Patients, their family and loved ones, are the most critical members of the team.

The Booth Gardner Parkinson’s Care Center team include physicians specialized in movement disorders, physician assistants, nurses, social workers, neuropsychologists, physical therapists, occupational therapists and speech and language pathologists. Other centers or community professionals can be a helpful part of the team. For instance, creative therapists in art, music and recreation, spiritual counselors, massage therapist and exercise trainers can be team members found in the community.

In a more global sense, the patient’s social network and community can provide additional resources to support the team. For example, many communities offer support groups, exercise groups or senior centers that could be part of the treatment plan.

The Booth Gardner Parkinson’s Care Center offers 2-3 full- day comprehensive care visits (download form) for patients seeking a comprehensive care approach. This program is designed to serve those who live at a distance from the center. Our team members will then make recommendations that your local physician can use for additional treatment closer to home.

If you cannot travel to our Center or another movement disorder center, you and your family can still assemble your own team. This task may seem overwhelming. To begin, it is helpful to prioritize your problems and concerns. Next identify the type of specialist from the list below that can best help you solve problems. To find a Parkinson’s specialist, ask your doctor for a referral and use the experience of others who live with Parkinson’s disease. A support group is a good place to start when looking for a recommendation. We have including a list of foundations and educational resources to help you find help in your area.

Think about your current problems or concerns and select from the specialists below. Ask your doctor for a referral to this person.  Remember that therapy can be used to help both your current problems and reduce the risk or affect of future problems or complications. We have included a prescription checklist in our comprehensive clinic that you can print and fill out with your doctor (download form). 

The medical team begins with the doctor, and includes nurse specialists or physician assistants. These clinicians play a significant role in long-term follow-up and complement the physician’s care. Such clinicians are also an important resource for counseling, education and long-term management and can be a source of support for the caregiver as well as the person with Parkinson’s.

Physical therapists help the patient address issues such as strength, endurance, movement control, flexibility, gait, balance, freezing and fall prevention. In addition, the physical therapist can custom-tailor a home exercise program to improve mobility problems and prevent or reduce the impact of future anticipated problems – especially early in the disease. Care partners are often included to help with everyday activities such as getting in and out of chairs, beds and cars.

Occupational therapists help a person with Parkinson’s manage everyday chores at home, at work or in the community. They play a key role in home safety, offering practical advice and devices to help with daily activities. Occupational therapists can also assess a work environment and use of technology, such as computers, and they often work with patients on cognitive training, driver’s evaluation, care-giving needs and time and disease management.

Speech and swallowing pathologists are specialists in communication who can help the patient with voice problems, especially if treatment is initiated soon after the emergence of soft or monotone voice patterns. A speech therapist manages all aspects of communication, including nonverbal communication such as facial expression. One popular resource is the Lee Silverman technique, a form of speech therapy that was designed specifically for people with Parkinson’s disease. Swallowing problems can also occur, especially in advanced disease. A swallowing specialist can evaluate and treat problems using a combination of modified diet, altered swallowing techniques and exercises.

Social workers and counselors focus on the psychosocial and behavioral aspects of disease, including coping therapies and family needs. Supportive therapy, stress management, biofeedback and coping strategies can significantly improve physical and psychological well-being in any chronic illness. These individuals may help to identify home health needs, disability and work-related concerns and community resources, and work to determine the need for hospice care, respite services, assisted living and nursing homes.

Dieticians can help with unwanted weight loss or weight gain, constipation, vitamin deficiency and supplementation, protein-related medication interactions and dehydration. They may also be able to recommend dietary changes to reduce swallowing problems. 

A neuropsychologist evaluates cognitive (thinking) skills by employing tests to identify and measure cognitive strengths and weaknesses. Based on findings from these tests, the psychologist can then put in place a treatment plan based on enhancing cognitive strengths and working with areas that need improvement.  

Creative therapists are playing a bigger role on the team than in the past. These specialists include therapists in art, music, dance and recreation who work to use creative expression to influence physical and mental wellness and healing. Recreational therapy can also help a person enhance his or her hobbies and improve the quality of leisure time. 

Spiritual and community leaders, who are available through community programs, are often overlooked despite the fact that they can be a valuable source of strength and support. If your community has a senior center, or a wellness or exercise program – take advantage of it! If your community lacks specific programs for PD, seek out a support group and work with other members to create your own programs.

It is commonly believed that people with advanced PD are the only ones who will benefit from a comprehensive evaluation. This is not necessarily true. With the appropriate goals, motivation and expectations for treatment, individuals in all stages of Parkinson’s disease will benefit.

The Early Years with Parkinson’s
In early-stage disease, the focus is not so much on movement problems and disability as it is on maintaining health and wellness. Because PD is a progressive disease, it should be at this early stage when patient-centered self-management is introduced. The emphasis is not typically on “fixing” a problem but on preventing future problems. It is about maintaining hope, setting goals and establishing control. Awareness and education are critical to self management, but education alone is not enough. Education includes active participation by teaching action-oriented problem-solving techniques.

At this point, it can be helpful to create a program that addresses current and possible future problems. Continue gathering information about PD symptoms, treatments and side effects, and implement an exercise program. Think about lifestyle management, including stress reduction and coping skills, and be sure to practice general health maintenance by getting adequate sleep, exercising and keeping a healthy diet. People in early-stage disease may also want to obtain an occupational assessment and a social evaluation including home care needs and social support networks.

When and if disability increases with PD
After several years of living with Parkinson’s, challenges to quality of life may increase in such areas as movement, mood, communication and socialization. At this stage, the team may need to include a specialist in gait and balance therapy, and fall prevention techniques. Therapists in speech and communication may need to be consulted, perhaps along with experts in swallowing, diet and cognition. If driving becomes a problem, it is wise to undergo a professional assessment. And if getting around the house becomes more difficult, have your home evaluated for safety while figuring out how much help you may need with home and work activities. A “complete-care” approach can include a reassessment of hobbies and recreational activities and adaptation to changing roles in one’s life and family.

Living with advanced Parkinson’s
In the later stages of Parkinson’s, the focus turns to managing the condition and finding ways to optimize the quality of life. Among the issues that may face people with Parkinson’s and their families at this stage are bed and seating comfort, transfers to and from furniture and home health needs. The care team will want to explore and implement palliative and comfort care measures. This is also the time to gather information about home living arrangements such as assisted care, hospice, respite, adult day care and nursing home care.

Emotional and social support issues will become especially important at this stage of the disease, both for the person with Parkinson’s and for the care partner. Care partners should have the proper training and be sure to take care of themselves to avoid burnout.

The tasks may seem daunting, but assembling a team of Parkinson’s disease professionals that you can work with will help you achieve the greatest possible quality of life while effectively managing your symptoms and disease.