Most people living with Early onset Parkinson’s see their neurologist every three to six months initially, then every six to 12 months. However, if you are experiencing problems with your Parkinson’s or its treatment, more frequent visits may be required. As Parkinson’s is a complex disease and which can be difficult to diagnose particularly in early onset it can go undiagnosed for quite some time. Treating the condition can be complex as symptoms vary as well as people’s responses to medication. That is why you need to be prepared for your visit to your neurologist to get the most out of it, as the appointment can go by quickly and it can be difficult to remember everything you had intended to ask. It is a good idea to write your questions down or complete the questionnaire (on this website). This has a lot of symptoms which not everyone will experience but compiled to cover as many as possible so you can see if there are any changes since your last visit. It is a good idea to keep a copy for your own record for comparison.
Below is a helpful checklist for making the most of your appointment.
Before to your appointment
• Complete a list of all of your current medications – not just Parkinson’s medications. Include other routine medications like anti-inflammatories, blood pressure and cholesterol medications, and even vitamin and mineral supplements. Also include the number of times per day you take your medication.
• It may be helpful to make notes of your symptoms a week or two before your appointment with your neurologist. In addition to Parkinson’s symptoms, include any other health complaints that may or may not be related – particularly your moods. Sometimes a video may capture a symptom that can be difficult to describe. It is important to note other changes since your last visit like such as surgeries, changes in health or your living situation.
• If not completing the questionnaire, prepare a list of questions and concerns you would like to address during your appointment. Rank them in order of importance to you, so if you run out of time you will at least have covered off the most significant questions.
• If possible, have somebody accompany you to the appointment. It is useful to have another set of ears there so you can later compare notes to clarify your understanding of the information that you have received.
• Both you and your appointment partner should make notes during the session to ensure a complete record of the information. If you ask permission, you may also be able to record the discussion on your smartphone.
Before you leave your appointment
• Be sure you understand your treatment plan and any changes made to it – particularly medication changes. If new medication has been added, be sure you know what the medication is supposed to do, how much to take and when. Ask about potential side effects and what to do if they occur. Also have your prescription renewed so you do not have to go back to your GP for renewal.
• If you don’t understand something, it is important to ask. Ask about anything, as they will have heard it before. Your relationship with your neurologist is likely to last a long time and full disclosure and trust are important.
• If possible, make an appointment for the next visit.
After your appointment
• As soon as possible after your neurologist appointment, compare notes with the person that accompanied you to establish a common understanding of what was discussed and recommended for you.
Questionnaire Document available to be completed online and then downloaded for printing.