Northwestern's Comprehensive Care Model

Whether for one condition or a variety of conditions, every consumer of medical care comes into contact with many health professionals. We have all experienced seeking medical help for one symptom and ultimately encountering practitioners in diverse, and geographically disparate, specialties such as radiology, laboratory testing, physical therapy, neuropsychology, genetic testing, social work, and others. In fact, in any single case, the number of involved professionals increases with the complexity of the patient’s needs. Experts in interprofessional teamwork for healthcare agree that “the myth of the omnipotence of the independent practitioner” is increasingly challenged by the discovery that, when professionals work together, the result is increased health outcomes and quality of care, and decreased cost. Nonetheless, few programs use multidisciplinary teams to provide comprehensive services.

At our National Parkinson Foundation Parkinson’s Disease and Movement Disorders Centers of Excellence, we are proud to be in the forefront of comprehensive, integrated care delivery. We seek to meet our patients’ needs not only in the medical management of the disease, but also in patients and families’ overall quality of life. That includes physical therapy and exercise programs, occupational therapy, education and support groups, counseling, caregiver support, access to community services, voice and swallowing therapies, nutritional recommendations, neurosurgical (Deep Brain Stimulation) evaluations, and complementary practices such as yoga, massage, acupuncture. Furthermore, we offer this spectrum of care in one location, and in the context of a multidisciplinary team that collaborates face-to-face and routinely. With such collaboration in place, communication can be regular; professionals roles are clear; patients’ needs are the focus; and professionals are continually learning from one another. For continuity of care following a patient's multidisciplinary clinic visit, our physicians, when workable, will refer patients to the Rehabilitation Institute of Chicago for consultation with a physiatrist and ongoing out-patient Physical, Occupational, and Speech Therapies. RIC movement disorders teams--both outpatient and inpatient--work with our staff in order to make patient care as seamless as possible. We know that Parkinson’s disease affects a patient and family in many areas of their lives. We therefore treat PD in a holistic way to meet the myriad needs of the "whole" person.

When a patient comes to our clinic, our Clinical Nurse and our Movement Disorders Neurologist are the first professionals who see the patient. They gather a complete Medical History, which includes:

• symptoms
• past and current medications, dosages. and side effects
• physical conditions
• family history
• social history
• medical records related to current problem
• recent MRIs or CAT scans of brain or spine, along with any accompanying written reports
• names and contact information of physicians currently involved in patient’s care

Because the diagnosis of Parkinson’s disease and other movement disorders is a clinical judgment, based on the observations of a skilled specialist, the neurologist performs a thorough physical examination and spends as much time as necessary talking with the patient and family about their concerns and questions. We encourage a care partner or other family member or friend to accompany the patient to the neurology clinic, since another person may notice changes or symptoms of which the patient is unaware.

Since no definitive diagnostic test can confirm the presence or absence of Parkinson’s disease and Atypical Parkinson Syndromes, the neurologist might order Magnetic Resonance Imaging (MRI) of the brain in order to rule out other potential causes for the patient’s symptoms. MRI does not detect dopamine deficiency itself. Therefore, some patients under 50 years of age, and who have symptoms similar to PD, may also be screened for Wilson’s disease.

The physician will likely need to observe the patient over several months until it becomes clear that symptoms are consistent over time and are congruent with a presumed diagnosis.

The movement disorders specialist uses a standardized assessment tool known as the Unified Parkinson Disease Rating Scale (UPDRS) to help diagnose Parkinson’s disease and to follow a patient’s progress over time. The survey evaluates motor function, patient’s subjective experience of symptoms, performance of activities of daily living (ADLs), and side effects of medications.

During their time with the patient and family, the Clinical Nurse and Neurologist will learn about the patient’s quality of life, relationships, day-to-day functioning, exercise habits, and the like. Once the Medical Consultation is complete, the patient will then have an opportunity to talk with, and receive assessments or recommendations from, the allied health professionals on the multidisciplinary team.

Physical Therapy

The Physical Therapist in the movement disorders clinic plays a significant role in both evaluation and treatment of patients.

Assessment:

The Physical Therapist assesses patients’ balance, posture, range of motion, and functional strength. She observes movement patterns, and explores the impact of movement disorder symptoms on patients’ mobility skills and ability to perform activities of daily living. With regards to safety, the Physical Therapist assesses the patient’s risk of falling and possible need for an assistive device, such as a cane, walker, or wheelchair. Because the patient’s subjective report is an important part of a PT assessment, the Physical Therapist initiates discussion of questions such as: Does the patient feel slow or stiff while trying to move in bed, get up from a chair, or dress himself? Does the patient feel unsteady while walking, have difficulty getting started walking, or experience “freezing?” Has he fallen, or is he afraid of falling? What, if anything, is the patient doing in the way of exercise to manage the symptoms of Parkinson’s?

Treatment:

• Appropriate Parkinson’s-specific exercise education
• Gait and mobility training, with emphasis on safety to minimize fall risk
• Recommendations for appropriate adaptive equipment, and instruction in the correct use of such devices
• Caregiver/family training in safety skills and in patient’s exercise regimen
• Recommendations for community exercise programs
• Outpatient or homecare referrals

Occupational Therapy

Occupational Therapy is skilled treatment that helps individuals achieve independence in all facets of their lives. It gives people the “skills for the job of living” necessary for independent and satisfying lives (American Occupational Therapy Association, 2005). Our Occupational Therapist can help people to learn new and adaptive ways of performing the basic daily activities of feeding, oral and facial hygiene, dressing, meal preparation, and work. In addition to the teaching of techniques and strategies, the Occupational Therapist may recommend assistive products, devices, and equipment. Some examples might be: scoop plates, handled cups, and weighted utensils; button aides, jewelry hooks, and long-handled shoe horns; bigger telephone keypads. We make referrals for Occupational Therapy on an as-needed basis.

Speech Therapy

In the movement disorders clinic, the Speech and Language Pathologist evaluates the speech pattern of a patient, and designs treatment for that person’s unique pattern. The speech therapist first assesses the degree of one’s speech changes and difficulties, whether mild, moderate, or severe.

In the clinic setting, the speech therapist can:

• Make recommendations of vocal exercises to improve muscle function and guard against further speech decline
• Instruct the patient in strategies to compensate for deficits
• Recommend alternative methods of communication
• Refer patient to a therapist who is certified in Lee Silverman Voice Treatment (LSVT)

Swallow Therapy

The Speech and Language Pathologist also assesses for dysphagia, or swallow problems, in patients with Parkinson’s disease and other movement disorders. As many as 50% of people with PD develop swallowing difficulties. These problems may worsen as the disease progresses. Dysphagia can present with a variety of symptoms: coughing, choking, throat-clearing, or gurgly voice when eating or drinking; drooling; complaints of food “sticking;” increased time required for meals (not related to manual dexterity); unintentional weight loss. In the office, the speech therapist can do a clinical, or “bedside,” swallow screening. In addition, a videofluoroscopy (Modified Barium Swallow study) can be scheduled.

Depending on the symptom and severity, the therapist’s treatment recommendations might include:

• Diet modifications: thickened liquids and pureed foods
• Range of motion exercises for lips, tongue, larynx
• Other "maneuvers," e.g. "effortful swallow," "breath-hold swallow"

The Center offers a variety of support groups and educational opportunities throughout the year. A listing of our Center-sponsored support groups can be found in the Calendar and Support Group section on this site. For information about other movement disorder support groups in the Chicago metropolitan area, please call our Information and Education office at 312/503-4397.

Every October, the Center offers an annual patient-caregiver-community symposium on Parkinson’s disease. These conferences are free and open to the public. Speakers include our own physicians and team members as well as other national experts. Content always spans the spectrum from the latest medical advances and research to the day-to-day practicalities and personal experiences of living with Parkinson’s disease.

In addition, our Social Worker and Physical Therapist frequently give in-service training in Parkinson’s disease and movement disorders to homemaker agencies, long-term care staffs, senior centers, and assisted living residents. Our physicians conduct Grand Rounds in many different hospitals and VA sites, and are frequent speakers at national and international conferences.

For more information on current speaking engagements, please call 312/503-4397.

For patients who require nutritional support and guidance, our Center’s physicians make referrals to the Center for Integrative Medicine (CIM) of Northwestern Memorial Physicians Group. The CIM Functional Nutrition and Naturopathic Practitioner helps to design a personalized nutrition program that takes into account an analysis of the patient’s food intake, body, health, and medications. Special care is taken so that up-to-date and evidence-based scientific recommendations coordinate with patients’ prescription medications. CIM counselors and the PD Center team maintain communication about patients’ treatment and progress.

Our Center also refers to the Center for Integrative Medicine for other complementary therapies, such as Massage, Acupuncture, and Behavioral Medicine.

The professional Social Worker on the team understands movement disorders and their effect on not only the patient but also the entire family system. The Social Worker plays multiple roles, both within and outside the clinic setting.

During neurology clinic visits, the Social Worker:

• evaluates patient and family functioning, e.g. emotional state, thinking and communicating, social support, caregiver issues and needs
• distributes educational publications about multiple aspects of Parkinson’s disease and movement disorders
• counsels patients, care partners, and family members
• provides a wealth of information about concrete services and community resources
• makes direct referrals to community programs
• follows up in the coordination of care with collateral agencies

Direct referrals might include:

• driving safety evaluation
• legal, disability, and guardianship counsel
• transportation assistance programs
• home care
• long-term care
• individual or family counseling

Outside of clinic time, the Social Worker leads support groups for patients and caregivers, teaches about movement disorders to professionals and community groups, and coordinates the Center’s educational symposia.