Monitoring your Parkinson's
Keeping a weekly or monthly diary of how you cope with your Parkinson’s including the drugs you take, the side effects and problems you experience, including any changes in behaviour or emotions, can be very helpful.
You can discuss any changes or concerns with your doctor and work out the best way to deal with these.
It can also be useful when applying for financial benefits.
Why is a diary useful?
When you visit your doctor or other professionals, you often don't have a lot of time to go into detail about how you are. You may see the doctor 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.
The diary enables the doctor to see how you have been coping over a period of time and helps to pinpoint areas where you are having difficulties.
It may also show them how your abilities can vary from day to day and indicate patterns, in symptoms or effects of medication that need sorting out.
You can also use it to record any embarrassing issues that you want help with but find difficult to ask about.
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.
You could also keep an electronic diary - use whatever suits you best.
It is helpful if you write details about drugs in red, and problems with movement and other symptoms in blue. Then you and your doctor can see at a glance if there is any connection between problems with movement or other symptoms and the drugs you are taking.
What should I include?
We have listed some questions below to help you think about your circumstances. However, these are a guide only and if they are not relevant to you, ignore them.
Include anything else that you feel is important that the questions do not ask. 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.
- How long have you had Parkinson’s?
- What particular symptoms cause you problems?
- What is important to you?
- What would you like to do that you are unable to do without help?
- What are your personal circumstances?
- 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 who doesn’t live with you (for example a daughter or son or friend who does your shopping for you or takes you to hospital appointments) or do you cope 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?
It can sometimes be helpful for the person with Parkinson’s and their carer to complete a diary each, particularly if their needs are being assessed together.
- Do you have any problems with communication? If so, what? (Handwriting, speech, facial expression?)
- Sometimes communication difficulties such as poor speech and lack of facial expression can make it harder for people to understand you or get to know you. Tell them what you want to say or what is important for you in your diary.
- What drugs do you take, how often and when do you take them?
- Do you need help to remember to take your tablets?
- Can you manage the safety caps on the bottle?
- Do you experience side effects such as ‘off’ periods during the day or when out and about, or involuntary movements (dyskinesias)? If so, how does this affect your life and your ability to do certain things?
- Do you have problems with balance or feeling unsteady on your feet?
- Do you experience pain?
- Do you have a problem getting out of bed? If so, do you need help? Who helps you? What do they help you with?
- How do you get out of bed? Do you have problems with initiation of movement? Is your balance poor?
- Do you have trouble getting the bedclothes or duvet off and on?
- What do you find particularly difficult?
- Do you have problems with washing (including bathing or showering) or dressing?
- 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 or 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 with movement?
- How long does it take to perform movements?
- What movements do you find particularly difficult?
- When you move do you need to use furniture/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 you have problems getting about because of mobility problems?
- 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 or depressed? Are there particular things that make you feel like this?
- Do you need emotional support?
- Are there leisure activities you enjoy that you need help with? (Sport or gardening?)
- For many people with Parkinson’s, leisure may include visits to shopping centres that are out of town. Do you need help to get there and does someone have to be with you? Do you have access to appropriate transport to do this?
- What about holidays? Do you have a holiday? If not, would you like one? Do you know that specific holidays for people with disabilities are available?