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Keeping a Parkinson's diary

Keeping a weekly or monthly Parkinson's diary can be very helpful in understanding how you are affected over a period of time. It can help with monitoring how the symptoms of Parkinson’s affect you, how you respond to your medications and difficulties you encounter with everyday activities. A written record can be an accurate reflection of your life with Parkinson’s over a period of weeks, months or years and can help in highlighting:

  • the pattern of symptoms you experience
  • the effectiveness of the medications you take and how long they last
  • any side effects of medications
  • any changes in your emotions or behaviour that may be related to medications.

Writing down your own individual experiences on a day-to-day basis can also help you effectively communicate any changes to your symptoms or your feelings with your doctor. This can be very useful, particularly as appointments are often too short for doctors to ask lots of questions, and your visit may be on a day when your symptoms do not follow their general pattern. 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 you have with daily activities
  • pinpoint patterns of symptoms
  • decide on any necessary adjustments in medication dosage and timings.

Maintaining a diary can also help you track your response to medications if adjustments have been made, to see how effective these changes have been and to decide if further alterations are necessary.

Of course, carers can play an important part in keeping a diary, helping to prompt you to note useful information on a regular basis. Do let your carer know you are keeping a diary - they too may wish to make contributions. They may also want to keep a carer’s diary.

What type of Parkinson's diary should I use?

You may hear the terms 'Wearing off’ and ‘Motor’ diary – both are ways of recording your symptoms in relation to medications you take. It can be helpful if you write details about medications in red and notes regarding symptoms and problems you experience in blue. You and your doctor will then be able to see at a glance if there is a link between symptoms and your drugs, and if your medication needs adjusting because it is no longer providing adequate symptom control.

It may also be helpful to keep a medication record in which you record the name of each medication, the dosage, timings and also any special instructions for taking them, such as at mealtimes etc. This will provide your doctor with a snapshot so that you don't waste precious appointment time explaining to him what you take. Also, let him or her know of any difficulties you have with your medication regime, for example if you struggle with safety caps on bottles.

Keeping a communication record can also be helpful as this allows you to record specific things you would like to discuss with your doctor at your next appointment.

Your healthcare team may be able to provide a template diary to use.

What information should I record?

Providing the information is accurately recorded, the structure your diary takes is entirely up to you – you may prefer to write information on a blank sheet of paper or on a printed template for each day, or you may wish to use a computer. The most important thing is to record information that will be helpful to your doctor, such as:

  • the times of day you take your medications
  • the times of day you have good symptom control
  • which symptoms re-emerge during the day and when
  • which symptoms you experience at night
  • any complications you may experience, such as dyskinesia, and when they occur – particularly in relation to medication times
  • what meals and snacks you eat and at what time. Make a note of whether eating certain foods affects your symptom control – protein, for example, can interfere with the absorption of some medications
  • wearing off symptoms – it may be helpful to rate each of these on a scale of one to five, according to how much they impact on your daily life. This can help evaluate the effectiveness of any change to your medication or dosage.

Recording additional information

Doctors may not routinely ask you about how you cope with your daily life. It may therefore be helpful to record additional information to make your doctor aware of difficulties you experience with everyday activities and would like help with. For example you might use your diary to record aspects of daily life you find hard and which perhaps cause stress or tire you particularly, for example:

  • Communication, including facial expression, speech and handwriting
  • Personal hygiene - is washing or getting in and out of a bath difficult, can you cut your nails, shave yourself?
  • Dressing - do you need help with this?
  • Eating – do you need help with preparing meals or cutting up food, and do you have trouble swallowing?
  • Do you have trouble turning in bed at night, or getting to the bathroom at night?
  • Do you have balance difficulties, have you fallen recently?
  • Is it difficult to get in and out of a chair, a bed or a car?
  • Do you experience any pain?

Finally, to give your doctor an accurate understanding of your circumstances so that they can provide appropriate support it is a good idea to make a note of:

  • what assistance you currently have, for example family help or a carer, and what they help with
  • additional help you feel you need in coping with daily activities
  • equipment you currently use to help with movement and daily activities.

Acknowledgement

Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:

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