Creating a Team
How do you manage Parkinson's disease effectively and at the same time fulfill the roles and responsibilities you have in other aspects of your life?
Put simply, you do not do it alone. You may also find that you can't (or don't want to) do things the way you have in the past. Identifying people with whom you can communicate openly and honestly about the various aspects of life with PD can help you, and those around you, adjust to changes as they occur. Research suggests that the more professional and personal support people with chronic illnesses have, the better they do. Developing (or maintaining) relationships with experts in the field of PD, and with people who care about you, can make life with PD less lonely and less difficult.
Your team members and the role or roles they assume are likely to change as your symptoms change and as the disease progresses. Some will go the distance, staying with you throughout your life with Parkinson's. Others will be sprinters, accompanying you as you manage particular symptoms, emotions, or transitions.
Your Core Team
Each person's team will, of course, be unique. There are, however, some common features of healthcare and support teams. Most support teams have several prominent and consistent members including:
- Physician: Likely to be the one who suggests a course of action for the rest of the team to follow (for people with Parkinson's, a neurologist or movement disorders specialist often assumes this role. Some people stay with the same doctor for years, others may change doctors after pursuing a second opinion or moving to a new area. The important thing is finding a physician you feel you can trust and one who will listen to your concerns. Your team may also include an internist or family physician or other medical specialists. It is essential that all treating physicians know what the others are prescribing and what you may be doing on your own (i.e., complementary medicine treatments or supplements).
- Family and Friends: Although "family" technically refers to blood relations, many people consider their dearest or most long-time friends "family." It doesn't matter that much whether your support team is small or large, includes family or friends, your partner, your parents, and/or your children. What matters is that you have different avenues for support, help and understanding.
- Support Group: There are traditional PD support groups as well as young onset support groups across the country. Many young people feel most comfortable establishing or participating in a young onset support group or becoming involved in a "virtual" support group held over the Internet in the form of a chat room, blog, or message board. Learn More About Support Groups.
Other Team Members
Parkinson's symptoms and their impact change over time. Keeping up with those changes and managing them effectively is one of the challenging aspects of the disease. Ideally, your team will include professionals from a variety of specialties who are able to step in when their particular area of expertise may be helpful. These often include:
- Mental Health Provider: Includes a wide range of professionals who specialize in providing different types of mental health services.
- Physical and/or Occupational Therapist: Both can address mobility issues, though occupational therapists focus more on helping you perform activities of daily living.
- Speech and Language Pathologist: Provides therapy to improve volume and clarity of speech as well as address swallowing difficulties.
- Registered Dietician: Often helpful if/when there are gastrointestinal issues or swallowing difficulties.
- Dermatologist: Annual checkups are a good idea due to increased risk of melanoma in people with Parkinson's.
- Optimize and Personalize your Healthcare (Webcast)
Presented by Dr. Monique Giroux at the Young Onset Parkinson Conference, Irvine, CA 2012
- Levodopa, Melanoma and Parkinson's Disease: Is There a Connection?