Using a diary to monitor your Parkinson's
A diary can be a useful way of letting your GP, specialist or Parkinson's nurse know what problems you’re experiencing, the changes in your condition from day to day or over a period of time, and how well your medication is controlling your symptoms.
Here we've listed some questions to help you think about what to write in your diary. They are just suggestions, so if something isn't relevant to you, ignore it.
About you
- How long have you had Parkinson’s?
- What particular symptoms cause you problems?
- What would you like to be able to do without help?
- Do you work? If so, what do you do? Is there anything about your working life you need help with?
If you live alone:
- Do you have someone who helps you or do you manage entirely on your own?
- What aspects (if any) of living on your own make it hard for you to cope?
If you live with others:
- Does anyone you live with provide you with help and support to manage your Parkinson’s? If so, what is their relationship to you? What is their health like?
- Do they get any support? Is there any support they would like?
You may find it helpful to colour-code your entries so that information on drugs is in one colour, symptoms in another, and so on. Then you and your doctor can see at a glance if there is any connection between the two.
Communication
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Do you have any problems with communication, including with your handwriting, speech or facial expression? If so, how does it affect you?
Drug management
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What drugs do you take, how often and when do you take them?
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Do you need help to remember to take your tablets?
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Do you have any difficulties opening the safety caps on the bottles?
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Do you experience side effects such as ‘off’ periods during the day or when out and about, or involuntary movements (dyskinesia)? If so, how does this affect your life and your ability to do certain things?
If you’re repeating the same entries every day, then it might be more useful to only record when things change, such as if your symptoms are getting worse or you find it difficult to do certain things for the first time.
General movement
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Do you have problems with balance?
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Do you experience pain?
Getting up
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Do you have a problem getting out of bed? If so, do you need help? Who helps you? How do they help?
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Do you have trouble changing your bedding?
A diary works best when you try to record the most relevant parts of the day. But naturally there may be some days when you don’t feel like keeping a log of what has happened.
Washing and dressing
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Do you have problems with washing (including bathing or showering) or dressing? What do you find particularly difficult?
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Can you get in and out of the bath or shower without help?
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Can you dry yourself afterwards or do you need help?
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Can you cut your toenails yourself or do you need help?
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Do you need help with shaving or washing your hair?
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What do you need help with when dressing or undressing? (Socks, tights, underwear, buttons, zips, make-up, jewellery, shoes, coat?)
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How long does it take you to get dressed or undressed?