By Lawrence I. Golbe, M.D.
People with Parkinson’s disease (PD) typically visit their neurologist two to four times a year. As you or your loved one may have experienced, it can be challenging during these rare visits to communicate all of your questions about your condition and your overall health.
How can you maximize your time with your doctor and leave your appointment confident that all your concerns have been addressed? The best thing you can do is to come equipped not only with the right information, but also with the right questions.
Start by organizing your health information and questions in advance. Arrive early so that you can complete your insurance forms and other paperwork ahead of time. Try to bring all of the items discussed below and answer all of the questions listed. These preparations can help both you and your doctor to optimize your care.
I. What To Bring to Your Appointment
Before you arrive, especially if it’s your first visit, be sure to ask the doctor’s office what pertinent information you should bring.
Important items will likely include:
• Notes from previous doctors’ histories and examinations
• Lab/test reports
• Films or CDs of brain imaging (not just the radiologists’ reports)
• Information about your medication history (For each medication, it is helpful to know the duration of treatment and the maximum dosage in the past, as well as any benefits or side effects you may have experienced)
Upon your arrival, give your nurse or doctor any other paperwork that may require your doctor’s signature.
Examples of such items include:
• A list of prescriptions to be refilled
• Disability forms to be completed
• Request for handicapped parking
• Anything else that requires the doctor’s sign-off (e.g., request to be excused from work)
II. What Information to Share
During your visit, share with your doctor details about your medications, your Parkinson’s symptoms (new and existing) and other health issues you may be experiencing. It may be helpful to make a list of each problem area in advance to make sure you don’t leave anything out.
You should be prepared to:
• Know your medications
• List your movement-related problems
• List any symptom fluctuations and dyskinesias
• List your nonmotor problems
Know Your Medications
It is key for your neurologist to know which medications you are taking and when you take them. Additionally, if you see a variety of doctors, they each need to know what the others have prescribed. Careful communication between physicians will help to avoid the risk of negative drug interaction. Therefore, your medication list should include all prescription medications, both those for Parkinson’s and those for other conditions, as well as any over-the-counter medications or nutritional supplements you are taking. You should also mention to your physician whether your medication plan has recently changed.
List your Movement-related Problems
Parkinson’s symptoms can change over time and vary tremendously from one person to another. To best communicate your life with PD, share with your doctor any new problems you have noticed. If your PD has begun to affect your daily activities (e.g., working, driving, getting out of chairs, performing manual tasks, etc.), describe these changes. If your symptoms fluctuate, note any patterns that may occur, especially if the problems appear related to the timing of your medications (particularly Sinemet®) or related to your meals or sleep cycle.
List any Symptom Fluctuations and Dyskinesias
After a few years of taking medication, people with Parkinson’s may begin to experience “wearing-off” spells and/or dyskinesias.
A “wearing-off” spell is when your Parkinson’s symptoms gradually return before it is time for your next dose of medication. For some people, medications may be effective for only three hours or less. If you think you are experiencing “wearing-off” spells, be sure to tell your doctor how they relate to the timing of your medications and meals.
A few people with PD experience “off” periods unrelated to the timing of doses. You should inform your doctor of these, too.
Dyskinesias are twisting and writhing movements of the limbs, trunk, neck and face, caused by medications. Tell your doctor if you think you are experiencing these types of movements, noting their severity and relation to medication doses and meals.
List your Nonmotor Problems
Parkinson’s disease is primarily known to affect movement, but there are many nonmotor symptoms that you may find even more troublesome than your motor symptoms. These problems can be caused by PD itself or by medications that treat it. It is important to communicate these to your doctor.
Since PD can affect every organ system of the body, the list of nonmotor symptoms that can occur is long. Complaints related to the gastrointestinal tract include swallowing problems, constipation, reflux symptoms, nausea, poor appetite, weight loss or changes in bowel function. Urinary symptoms may include frequent urination, urgency or incontinence. Sleep disturbances are common, and may include insomnia, restlessness, frequent awakening, violent dreams, hallucinations or excessive drowsiness.
Other nonmotor symptoms may include poor sense of smell or taste, vision problems, disturbances of sexual function, dizziness or lightheadedness upon standing, ankle swelling or various types of painful symptoms. Problems with mood and thinking, anxiety, motivation and judgment may all occur in PD, and it is important to address these symptoms.
The medications for PD may be responsible for side effects that can sometimes be confused with symptoms of the disease. Medications may cause reversible side effects such as loss of appetite, nausea, diarrhea, constipation, dry mouth, rash, ankle swelling, dizziness, drowsiness, memory problems, hallucinations and changes in behavior. Describe to your doctor any problems you may be experiencing and which medications you think could be causing them.
III. Whom to Bring to Your Appointment
It is often helpful for a person with Parkinson’s to be accompanied by someone who can take notes throughout the appointment and provide an observer’s perspective. Some people with PD may lack a full awareness of their impairment in thinking or judgment. An individual who has observed the person with PD for a long time will be able to detect any recent or uncharacteristic personality changes, such as a new tendency to gamble or to purchase lottery tickets, or impulsive behaviors relating to shopping, computer use or sex. Having a helpful and candid observer, usually a family member, caregiver or close friend, may help your doctor address these issues.
IV. Questions to Ask the Neurologist
There are many possible topics to discuss and no single visit can accommodate them all. After your examination is complete and your treatment plan is confirmed, you may wish to focus on discussing certain issues.
You should be prepared to ask questions about:
• Lifestyle issues
• New Parkinson’s research & treatments
It is key for a person with Parkinson’s to understand his or her treatment plan: which medications to take and when to take them. Medication errors are common and can lead to side effects or poor treatment results. Ask about the medications you are currently taking, the doses and when you should be taking them. If your present medication regimen is not sufficiently effective or is causing side effects, inquire as to other available medications, especially ones that may have come out recently.
There are some lifestyle changes that may ease some of your symptoms. Ask your doctor about optimizing sleep quality and starting an exercise program. Will a new exercise program — aerobic, stretching, or weight training — or going to a physical therapist, help your symptoms? For patients with freezing or balance impairment, physical activities and the avoidance of falling represent an important area of concern.
Discuss your nutrition and its impact on your PD. Do you need to change your diet, perhaps by eating foods higher in fiber or by drinking more water? In particular, you may want to discuss your protein intake. Some people with PD find that by eating more or less protein, they can optimize the effects of medications.
New Parkinson’s Research and Treatments
Don’t forget to inquire about promising new treatment approaches for Parkinson’s. Ask about new medications and consider participation in a clinical trial. After talking to your doctor, if you would like to find a clinical trial in your area or need more information in order to weigh the benefits and risks of participating, visit www.PDtrials.org.
With a little preparation before your next visit to the neurologist, you will become an active participant in your own health matters and you can ensure that no concern, test result or question is left unexplored. Your visit will be productive and you will help your physician to find a treatment regimen that permits you an active and productive lifestyle.
Lawrence I. Golbe, M.D., is a neurologist at Robert Wood Johnson University Hospital and is Professor of Neurology at the University of Medicine and Dentistry of New Jersey Robert Wood Johnson Medical School.
This article was originally published in the Fall 2008 of PDF's newsletter, News & Review.