Talking with your doctor about Parkinson's disease

To manage Parkinson’s disease (PD) successfully, and to gain the most from everyday living, it is very important to communicate well with the treating doctor and other members of the multidisciplinary team. In this way, the team can work together with the person with PD to find the best management strategies.

Communicating well with the doctor has two main benefits. First of all, it allows the person with PD to gain more understanding about their condition and the treatments that are prescribed. Secondly, because PD is a very variable disease, it gives the doctor a better idea about the symptoms that are experienced in each individual case. As a result, the most appropriate treatment can be prescribed.

Having a good relationship with the doctor also means that the person with PD will feel able to discuss any concerns that may arise as the condition progresses. If the doctor does not appear to be as responsive as the person with PD would wish, then they should insist upon being referred to another doctor, PD specialist or neurologist. If necessary, a supportive friend or family member may be able to help with conveying this message during an appointment.

Key questions

Whatever questions or points that you wish to discuss with your doctor, it is very important to write them down beforehand, and take this list with you to your appointment. Some examples of the type of question that you might wish to ask your doctor are listed below.

  • Why am I taking this medication?
  • Why has this medication been changed/added to my regimen?
  • How long will I stay on this medication?
  • What side effects can occur with this medication?
  • Does my medication have long-term complications?
  • I am unhappy about part of my treatment. Can something be done about it?
  • I find a certain symptom very troublesome. Can this be treated?
  • What should I do if I experience side effects with my treatment?
  • Now, or in the future, I will need help at home. Whom should I contact?
  • What can I do in order to improve my living surroundings, as a person with PD?
  • I feel overwhelmed and could do with some emotional support. Can you recommend a local organization and/or counselor to help?
  • If you have been recently diagnosed as having PD: Although I don’t currently have serious mobility problems, can I be referred to a physiotherapist for advice on exercises/activities to improve the way that I move now and to help prevent problems in the future?
  • If you experience stiffness in muscles and joints, and/or have difficulty with movements such as getting up from a chair, turning in bed or keeping your balance: Can I be referred to a physiotherapist to seek advice regarding my mobility problems?

As it can sometimes be difficult to know which questions to ask your doctor, the key questions listed above have been reproduced on a ‘Communication card’ that can be downloaded from this website. This communication card can be taken to your doctor’s appointment, during which you may want to ask some of these questions, or use them as a basis for questions of your own.

Essential points

When meeting with a doctor or Parkinson’s disease (PD) nurse, there are certain things that are especially important to talk about. A list of these points is given below.

  • Describe any symptoms that you have experienced, including whether they have worsened or improved since the last visit, e.g., poor control of movement, stiffness, shaking/tremor, difficulty walking, sickness, dizziness, etc.
  • Explain when your symptoms occur, for example, shortly before your next dose, early in the morning, after a certain event/trigger, or in relation to food.
  • Discuss all concerns or worries about PD or the medication you are taking – i.e., your opinion regarding PD and its treatments.
  • Let the doctor know if you would like a change in your medication.
  • Tell the doctor about any other medications you are taking, including any bought over-the-counter. This is very important, as some medications may not be suitable to take while receiving PD therapies.
  • Keep the doctor up-to-date on any significant changes in your life – for example, stressful events such as bereavement, or changes that may affect your medical routine. These events could influence your symptoms.
  • Discuss how people around you are coping with PD and its treatment.
  • Make sure you understand exactly how and when your medication should be taken, before you leave the surgery/clinic. If necessary, write these instructions down, or ask to have them written down for you.

General discussion topics

When speaking to your doctor about Parkinson’s disease (PD), here are some other topics related to everyday life that you may wish to discuss:

  • posture (standing, walking)
  • sleeping, turning in bed
  • use of hands (trembling, rigidity)
  • depression and anxiety
  • tiredness
  • typical daily activities
  • diet – eating, drinking, swallowing
  • exercise
  • going to the toilet – delayed or difficult bowel movements, difficulty passing water
  • skin condition/problems
  • pain
  • sexual issues
  • living situation – transport/driving, housing
  • talking
  • writing
  • learning ability, memory, concentration

Tips

Listed below are some tips for good communication that have been recommended by doctors and other medical professionals who work with people who have Parkinson’s disease (PD).

  • Prepare for your doctor’s appointment – make a list of any points that you wish to discuss, and take this with you. Make the questions as specific as possible.
  • You might find it helpful to make a regular diary (daily, weekly or monthly) to record how you have been coping with your symptoms. Read this before going to your appointment, and note down anything you want to mention.
  • If there is a lot you need to discuss with the doctor, then make this clear when you book your appointment. You might be given a longer appointment, or be asked if you wish to talk with another professional such as a specialist nurse.
  • You may find it helpful to take someone with you when you visit the doctor – for moral support, or for help with communicating. However, on some occasions, it may be more appropriate to speak to the doctor on a one-to-one basis.
  • If you have prepared a list of medications (a medication record card), then take this to your appointment. It can save time and long explanations.
  • Make sure that you are honest about your symptoms. Making symptoms seem better or worse than they are will give the doctor a false idea of how the treatment is working.
  • Don’t feel obliged to use medical words with the doctor when describing symptoms – use language that you are comfortable with to give simple, accurate descriptions.
  • If you don’t understand what the doctor says, then say so. Ask if it can be explained again or in another way. It is very important that you understand.
  • Write down, or ask the doctor to write down, anything important if you feel it will help you remember.
  • If there is any issue that you feel unable to discuss with your doctor, then you can contact another member of the multidisciplinary team, your local PD association, or support group.