The Role of the Patient

The Role of the Patient

Treating Parkinson's disease is not exclusively the doctor's job; there are many things a person with Parkinson's can do to contribute. Regular exercise, joining a support group, maintaining a healthy diet and taking part in a clinical trial are just some of the things you might consider.

• A Healthy Patient/Doctor Relationship
• Exercise
• Diet
• Support Groups
• Physical, Speech and/or Occupational Therapy
• Clinical Trials

A Healthy Patient/Doctor Relationship: Making an accurate diagnosis of Parkinson's - specifically in its early stages - is difficult, but a skilled practitioner can come to a reasoned conclusion that it is Parkinson's. Every person diagnosed with Parkinson's should consider getting a second opinion from a neurologist who specializes in movement disorders and is up-to-date on research and approaches to therapy.

Locating a qualified physician is a first step; next is considering whether the physician is the right one. A person with Parkinson's will work with a physician for many years. Consider these questions:

• Are you comfortable speaking with your physician?
• Do you feel respected by your doctor?
• Are questions answered to your satisfaction or do you come away from a visit feeling that you have not been taken seriously?
• Can you get in touch with the doctor between visits?

To find a neurologist or movement disorder specialist in your area:

• Ask your primary care physician for a referral
• Seek referrals from other living with Parkinson's
• Contact your insurance provider for a list of neurologists or movement disorder specialists in your network
• Contact PDF for a referral.

Exercise: For people with Parkinson's, regular exercise or physical therapy is crucial for maintaining and improving mobility, flexibility, balance, range of motion and for warding off many of the disease's secondary symptoms such as depression and constipation. PDF offers Motivating Moves for People with Parkinson's, a unique program of 24 seated and stimulating exercises that were created especially for people with Parkinson's. Copies are available for ordering through the website, or you can call or email PDF for more information. As with every aspect of your care, always consult your doctor before starting an exercise program.

Diet: Many people with Parkinson's lose weight because of poor appetite and inadequate food intake. It is recommended to maintain a full diet that contains all the daily nutritional requirements, including extra fresh fruits and vegetables for fiber to help prevent constipation and plenty of fluids to keep hydrated.

Some people who take levodopa find that protein may interfere with the medication's effect. Limiting protein intake or staggering the medication dosing to avoid conflicts with meals can help this problem. However, adjustments in protein intake are only worthwhile for those very few people whose response to levodopa is indeed sensitive to dietary protein.

People with Parkinson's who lose weight for no clear reason should discuss this with a physician.

Please click here to view a copy of PDF's fact sheet, Nutrition and Parkinson's Disease, written by a registered dietician.

Support groups: For many people, support groups play an important role in the emotional well-being of patients and families. They can provide a caring environment for asking questions about Parkinson's, for sharing stories and advice and for creating friendships with people who have experienced similar problems.  PDF keeps a listing of nationwide Parkinson's support groups. To find a one your area, please call or email PDF at (800) 457-6676. In addition to in-person support groups, many people also find online groups and list servs helpful. For a listing of list servs that serve the Parkinson's community, please request our publication, Web Resources for People with Parkinson's Disease.

Physical, Speech and/or Occupational Therapy: These therapies can help Parkinson's patients control their symptoms and make daily life easier. Physical therapy may increase muscle strength and flexibility and decrease the incidence of falls. Speech therapy can increase voice volume and assist with word pronunciation. The Lee Silverman technique is a special speech therapy that can be very beneficial to people with Parkinson's - for further information see www.lsvt.org.

Occupational therapy gives people alternative methods of doing tasks that they can no longer perform with ease. These options may provide a stronger sense of control when living with Parkinson's disease. A neurologist should be able to provide recommendations for these therapies and, if needed, a referral. These therapies may or may not be covered by insurance.

Clinical Trials: Clinical trials (also called medical research, clinical research or a clinical study) help researchers answer specific questions about the safety and efficacy of new treatments by studying its effects in people. They are an essential and necessary component of the scientific research process. Simply put, there is no other way for research to show that a proposed treatment works. In addition to contributing to research, joining a clinical trial can provide a person with early access to potentially-helpful Parkinson's treatments and drugs that are not yet on the market.

PDtrials was created in 2004 to increase the PD community's awareness of clinical triasl and provide up-to-date information on trials enrolling participants. For more information on clinical trials and how you can get involved, visit www.PDtrials.org.   This project is led by the Parkinson's Disease Foundation, in cooperation with the following organizations: American Parkinson Disease Association, Inc, The Michael J. Fox Foundation for Parkinson's Research, National Parkinson Foundation, Parkinson's Action Network, The Parkinson Alliance and WE MOVE.