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Mid-Stage PD: Building Your Health Care Team
By Paula McFeely Wiener, M.S.W., L.C.S.W.
A comprehensive approach to health care — taking advantage of the expertise of a team of professionals — can be very beneficial for a person living with mid-stage Parkinson’s disease (PD). It serves to effectively manage the symptoms and side effects of mid-stage PD and to maximize quality of life. While some people can find all of their specialists in one practice, in most cases, the person with PD will have to build his or her own team. How can you build your team?
The Movement Disorders Specialist
The quarterback of the team is the movement disorders specialist (MDS), a neurologist who has subspecialty training in movement disorders, a classification that includes Parkinson’s. These doctors offer the highest available level of knowledge and experience in Parkinson’s and the complexities of mid-stage PD.
If you live near a medical center that has a movement disorders program, an MDS may be your regular PD doctor. For those who live in an area where one is not available, it may be well worth the time and expense to travel to such a center once or twice a year. That doctor can assess your current condition and make recommendations that can then be carried out from day to day under the guidance of your local neurologist. Most neurologists are happy to engage in this collegial approach, so long as you discuss it with them first.
The Speech-Language Pathologist
Some people will experience speech problems in the early stages of PD. By mid-stage, speech issues are much more common. While people with Parkinson’s may not perceive themselves as talking too quietly or unclearly, many may find themselves being told by others to “speak up.” A speech-language pathologist (S-LP) may actually be able to help you get your voice back. One popular technique is the Lee Silverman Voice Treatment (LSVT® LOUD). It is the only therapeutic method clinically proven to improve PD speech problems and maintain those improvements over time. In addition to helping with speech difficulties, an S-LP can also provide coping strategies to those who have trouble swallowing.
The Physical Therapist
Problems with such functions as walking, balance, posture, flexibility and strength can all become more pronounced in mid-stage Parkinson’s. A physical therapist (PT) is trained to work with you to regain and maintain your mobility. A PT can also develop customized exercise programs that may improve mobility, strength, flexibility and will address both freezing and falls prevention. One treatment approach developed specifically for people with PD, LSVT® BIG, shows promise in preliminary studies in improving quality of life.
The Occupational Therapist
An occupational therapist (OT) can help you to meet the challenges that PD presents at home and in the workplace, by showing you ways to modify your environment, your approach to tasks and even the tasks themselves. An OT can also help you determine whether a particular assistive device — from a swivel seat for your car to a specialized computer mouse — will be useful for you. Many OTs maintain a lending closet of these devices so you can try them yourself before buying.
The Social Worker
Trained to help with a variety of life problems, the social worker (SW) usually offers counseling services to individuals, to couples and to families. Many SWs are also trained in techniques to reduce stress, depression and anxiety. They can link you to federal, state and local services and other resources. If you have children living at home, an SW at their school or in private practice may be able to help them adjust to having a parent with a chronic disease.
In addition to the “team members” listed above, some people with Parkinson’s disease will also seek the assistance of nutritionists, psychologists or psychiatrists. With the exception of those services that are provided by an SW, you will need a doctor’s order to ensure the services provided by these professionals are covered by your insurance. At your initial visit, make sure the provider understands the problem for which you would like assistance and request that your health care team members communicate with one another so that you receive truly comprehensive care.
In the next issue of this series, we will explore more actions you can take to live well.
Ms. Wiener is Community Outreach Manager at PDF.
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How to Build a Health Care Team
Talk to support group members and friends who might know of professionals specializing in Parkinson's.
Call PDF's national helpline at (800) 457-6676 to find an MDS in your area.
Visit www.LSVTGlobal.com or call (888) 467-5788 to locate a speech language pathologist trained in LSVT.
Visit www.helpstartshere.org to find a social worker.
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(Published in the Summer 2009 edition of News & Review)
(Published in the Fall 2009 edition of News & Review)