Understanding exactly what information your doctor needs to know and remembering everything you need to tell them in the time available isn’t always easy. But without adequate and appropriate information they cannot get a full picture of what help you need and may therefore find it difficult to choose the best treatment for you. It is important to remember that each case of Parkinson’s is individual and doctors cannot just prescribe a standard treatment; providing accurate information is vital.
Try not to ignore things that are perhaps only a little difficult at present, as they may get worse over time. Make a note of everything that is troubling you and take the list with you when you see your doctor; he or she will need to know the whole picture in order to address issues as they evolve. Here are some of the areas you might like to think about:
Daily routine and activities
Make a note of any activities that are becoming more difficult, such as eating, swallowing, turning in bed or bladder and bowel problems. For a checklist of things you might want to discuss with the various professionals who look after you see PD checklist You may find it helpful to look back on how you were at your last appointment and compare then and now. If you think you would benefit from help with certain aspects of life, for example getting dressed or eating, then let your doctor know. There are many other trained professionals within the multidisciplinary team who can help but your doctor needs to understand what assistance you require in order to put you in touch with the right person.
Keeping a diary
Keeping a diary can be very helpful in monitoring how the symptoms of Parkinson’s affect you and how you respond to your medication. Recording the exact timing and dosage of medication, as well as how you are feeling on a day-to-day basis, can also help you share any changes in your symptoms with your doctor. This might be particularly useful if your appointment is short and will assist the doctor in monitoring your treatment.
Furthermore, being able to review how you have been over a period of time can help your doctor:
- understand how effective medications are for you personally
- pinpoint any particular difficulties, patterns of symptoms or interactions with other medications
- decide on any necessary adjustments in medication dosage.
The information you write does not need to be lengthy but it should give an accurate picture of how you are from day-to-day. Ask your doctor for their advice on what to record and how often – some doctors even have a particular diary format they find useful.
For more information on keeping a diary see Keeping a diary.
Mood and mind – non-motor symptoms
A diary can also be useful to record how you feel from day-to-day. Increasingly, the ‘non-motor’ aspects of Parkinson’s are recognised as being extremely important. So being able to tell your doctor if you feel down, anxious or stressed for example can again provide them with the information they need to be able to improve your quality of life.
You might also notice alterations in your behaviour, such as a lack of interest in pursuing activities you have previously enjoyed, or changes to your sex drive. These things may be related to Parkinson’s and can be a side effect of medication, so it is important to make your doctor aware of them so that your medication can be adjusted if necessary.
Embarrassing problems
It is easy to brush awkward problems aside but if ignored and untreated they are likely to get worse. Try not to feel embarrassed if you have something you feel uncomfortable discussing, for example sexual difficulties or incontinence. It might be helpful to make a list that you hand to the doctor, explaining that you find these issues difficult to discuss. This approach may allow the doctor to ask questions, thereby breaking the ice, and encouraging you to talk about what is troubling you. It is very important to talk about worries and concerns, rather than bottle them up.
Your carer
Your doctor will also be keen to know how your carer is coping so do say if you think that your carer is struggling or has health problems of their own, as they may be able to provide help for both of you.
