If you are experiencing body tremors, problems with movement or balance, or unexplained neurological symptoms, your primary physician may recommend that you see a neurologist to either confirm a diagnosis of Parkinson’s disease (PD) or rule out other neurological disorders. If you already know that you have PD, you are likely seeing a neurologist to better manage your treatment. In both scenarios, it’s important to be prepared when discussing your condition. That often means paying close attention to your symptoms. Having a family member or caregiver along to help relay information and listen to your doctor’s instructions is extremely helpful, especially if that person is familiar with your symptoms and treatment. For some patients, having someone there to take notes during your visit is quite helpful for remembering instructions and other information later.
If it’s your first visit, ask the doctor’s office what medical information to bring along. A neurologist will often request any imaging scans in addition to radiologists’ reports. Recent lab results from blood tests as well as any exam reports from other doctors are also helpful to learn more about how your body is tolerating different medications. It’s important to know the names of the medications you’re taking, how often you take them, and in what amounts. If there have been any recent changes in your meds, you should also mention those changes and when they occurred. If you have trouble remembering the details of your medications, keep an updated, written log and take it with you to every visit.
In addition to performing a general neurological exam, a neurologist must evaluate how your medications are working and if you are experiencing any side effects, especially because side effects of PD meds are often similar to the symptoms of the disease itself.1 For instance, if you noted having a dry mouth after a new medication was added to your regimen, be sure to explain this to your doctor. Typical reversible side effects may also include: loss of appetite, nausea, diarrhea, skin rash, dizziness, drowsiness, or noticeable changes in behavior.1
Be prepared to discuss your symptoms in detail, even those that seem unrelated to PD.2 Your neurologist will ask you about motor-related symptoms as well as non-motor ones. Before you head to the doctor’s office, write down any changes in symptoms, such as fluctuations, that have occurred since the last time you saw your doctor. If PD has begun to affect such daily activities as driving, getting up from chairs, or work performance, make a note of that as well.
When Considering Motor Symptoms, Ask Yourself:
- Do I have tremors while at rest?
- Is it taking longer to complete everyday tasks like dressing?
- Has my posture or gait changed?
- Am I losing my balance?
- Are my muscles more rigid?
- Is my handwriting getting smaller?
- Am I experiencing changes with my vision?
A neurologist also needs to know about your non-motor symptoms to determine if your medications need to be adjusted or changed. Non-motor PD symptoms are vast. Chances are your neurologist will ask you about any eating or swallowing problems, nausea and/or constipation, weight loss, or changes in urination. He or she will also inquire about your sleeping habits and ask if you’ve had night sweats, insomnia, restlessness, acting out during sleep, violent dreams, or hallucinations.
When Considering Non-Motor Symptoms, Ask Yourself:
- Am I having problems concentrating?
- Am I experiencing problems with speech or memory?
- Am I depressed and/or anxious?
- Am I experiencing sleep disturbances?
- Have I noticed any skin problems?
Finally, a neurologist will also want to know how your medications are working, as some PD patients’ symptoms may return before it’s time for their next dose. Doctors sometimes refer to those moments as “off-time,” and additional medications may be added to your regimen to better control symptoms.3
Key Questions to Ask Your Neurologist
In addition to being prepared with your symptom and medication lists, you should have some key questions in mind to ask during your visit. This will make the most of your time with your doctor and help set your mind at ease regarding the management of your PD treatment. Consider these questions:
- Do I need further tests, such as a DaT Scan? If so, do they require any special preparation?
- Is my medication working as well as it could, or are newer meds available that may have fewer side effects?
- What side effects can I expect from my current meds?
- What new symptoms should I expect as my PD progresses?
- Will I have to change medications when/if I develop new symptoms?
- If my treatment stops working, are there other treatments?
- I have other health issues. How can those be best managed with PD?
- Would I benefit from physical therapy to help my motor symptoms?
- Would I benefit from speech therapy?
- Should I adjust the protein intake in my diet to optimize my meds?
- Are there any alternative therapies that may help my PD symptoms, such as yoga, tai chi, or massage therapy?
- Should I consider surgical PD treatments in addition to medication, such as deep brain stimulation (DBS) or lesion surgery?
- Should I restrict my activity in any way?
- Is there any new research that points to lifestyle changes that could help PD patients?
- Are there any clinical trials in my area for patients with PD?Will I eventually need a full-time caregiver?
Obviously, there are many more questions that you may want to ask your doctor; this list is only meant to prompt a discussion about general PD-related concerns. In order to encourage more discourse, many neurologists now offer their e-mail addresses to patients so they can ask questions between visits. Make sure to ask if your neurologist is available in this way to you or your caregiver.