Monitoring your Parkinson's
Many people with Parkinson’s find that keeping a diary is a helpful way of monitoring their condition.
Why is a diary useful?
When you visit your doctor or other health professional, you often don't have a lot of time to talk in detail about how you are. You may also see them when you're having a good day but the reality is that most of the time you are finding things difficult and need more help.
A diary can be an effective way of letting your doctor 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. It can also help remind you of things you want to discuss during your appointment that you may otherwise forget.
You can also use it to record any embarrassing issues that you want help with but find difficult to ask about.
If you are applying for welfare benefits, a diary can also be useful for keeping track of the different stages of the application process. Keeping a record of how your condition affects you will be helpful if you are asked to explain this on a benefits claim form.
What kind of diary should I use?
You can use any kind of diary or notebook to write down what you do and how you feel over the course of each day.
If you have a computer, smart phone or tablet device, you may prefer to keep an electronic diary or use an app. If you have problems writing or typing, you could also record your diary using a mobile phone or recording device (using video or audio). Use whatever suits you best.
It may be helpful if you write details about drugs in red, and problems with movement (motor symptoms) and other symptoms (non-motor symptoms) in green. Then you and your doctor can see at a glance if there is any connection between the two.
If you have a carer, it may be helpful for them to complete a diary too, particularly if your needs are being assessed together.
What should I include?
We’ve listed some questions below to help you think about what to write in your diary. However, these are just a guide and if they are not relevant to you, ignore them.
Include anything else that you feel is important that the questions don’t cover.
Again, 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. You may also want to add the names of professionals involved such as your GP, Parkinson’s nurse or specialist.
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. 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.
- 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?
- Do you live alone or with someone else?
If you live alone:
- Do you have someone who helps you with your Parkinson’s (for example a daughter or son or friend who does your shopping for you or takes you to hospital appointments) 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 are not living alone:
- Does anyone you live with provide you with help and support to manage your Parkinson’s (sometimes called a ‘carer’)? 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?
- Do you have any problems with communication? If so, what? (Handwriting, speech, facial expression?)
- What drugs do you take, how often and when do you take them?
- Do you need help to remember to take your tablets?
- Do you have any difficulties opening the safety caps on the bottles?
- 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?
- Do you have problems with balance?
- Do you experience pain?
- Do you have a problem getting out of bed? If so, do you need help? Who helps you? How do they help?
- How do you get out of bed?
- Do you have trouble changing your bedding?
- Do you have problems with washing (including bathing or showering) or dressing? What do you find particularly difficult?
- Can you get in and out of the bath or shower without help?
- Can you dry yourself afterwards or do you need help?
- Can you cut your toenails yourself or do you need help?
- Do you need help with shaving or washing your hair?
- What do you need help with when dressing or undressing? (Socks, tights, underwear, buttons, zips, make-up, jewellery, shoes, coat?)
- How long does it take you to get dressed or undressed?
in the home
- How well can you move around in your home?
- Do you ever fall, stumble or get stuck? Are there particular times of the day or particular activities when this is more likely to happen?
- Do you use any equipment to help you move around?
- How long does it take to perform movements?
- What movements do you find particularly difficult?
- When you move do you need to use furniture or door frames for support? Do you need the help of someone else?
- Have you had an assessment by an occupational therapist? If so, did they recommend any equipment or adaptations to help you? If so, what? (Stairlift, stick, rollator, wheelchair?) Do you use them?
- Do you need help with eating or drinking? If so, what help do you need?
outside the home
- How confident are you about managing on your own when you go out?
- Do you need someone to go with you for reassurance and support?
- Do you get tired easily?
- Do your mobility problems prevent you from getting out and doing things?
- Do you need help to turn over in bed at night?
- Do you have to get out of bed during the night to go to the toilet? How many times?
- When you are out of bed at night, does someone have to be awake to help you? If so, what sort of help do you need?
- Is your balance affected at night and are you unsteady on your feet? Do you get confused or frightened when you cannot get moving?
- When you get to the toilet, are you able to stand alone or do you have to hold on to someone or something for support?
- Do you feel stressed, anxious, depressed or experience low mood? Are there particular things that make you feel like this?
- Do you need emotional support?
- Do you feel understood and supported by your doctor or other health professionals you see?
- Are there leisure activities you enjoy that you need help with? (Eg sport or gardening)
- Do you enjoy going shopping and need access to appropriate transport to do this?
- What about holidays? Do you have a holiday planned? If not, would you like one? Do you know that holidays specifically for people with disabilities are available?