One of the most important things one can do when one is diagnosed with Parkinson’s disease is to create self-management program for oneself. Taking charge will help one build confidence that will enable you to lead a fuller active life despite the disease.
Taking charge of your disease starts with keeping a careful diary of your symptoms that can be shared with your doctor. The treatment that one will get will depend on how the disease progresses over the course and hence keeping a symptom diary is the first step in self-management
When one visits the doctor, one often does not have a lot of time to detail out all the issues and problems one is facing. A dairy can be an effective way of telling your doctor of the changes taking place in your life over a period of time and how well your medicines are controlling your symptoms and how you are being affected by them. Keeping a diary also helps one focus on the problem at hand in a more effective manner.
What do you record in your diary?
Section 1: About Yourself
- How long have you been diagnosed had Parkinson’s?
- What particular symptoms cause you problems? Describe these problems in as many details as you can.
- Keep daily records of these problems including a number of instances they have occurred?
- Do you work? What kind of work do you do? Does your Parkinson symptom cause you problems at work? In what way?
- Do you live alone or with your family?
- Detail out who in your family is a stay-at-home member.
- Do you have anyone who can take care of you at home?
- Detail out who this person is, and how much time this person can devote to take care of you.
Section 2: Movement disorders
- Do you have problems with balance?
- Do you ever fall, stumble or get stuck? Does this usually happen at particular times or during particular activities?
- Do you experience pain? What kind of pain do you face? Is it muscle cramps or pain in the joints?
- Do you have problems with bathing? What kind of problems do you face?
- Can you get in and out of the bath or shower without help?
- Are you able to towel yourself properly, especially your back?
- Are you able to shave properly without cutting yourself?
- Are you able to cut your nails effectively or do you need help?
- What problems do you face while dressing or undressing?
- Do you need help when putting on things like buttons, ear rings, shoes, zips etc?
- How long does it take for you to get dressed fully?
- Do you use any equipment to help you move around? What equipment do you use?
- How long does it take for you to perform simple movements?
- What movements do you find particularly difficult?
- Do you use the support of furniture, frames, people for support when you move around?
- Do you need help to turn over in bed at night?
- Do you need to go to the toilet at night while sleeping? How many times do you go?
- Do you need help at night to go to the toilet?
- Do you feel imbalanced at night particularly after lying down and then getting up?
- Do you have problems getting out of bed? How do you manage this? Do you use any support?
- In the toilet, do you do you’re your job standing or sitting? What problems do you face?
- Do you face any problem in talking or writing?
- Has your handwriting changed over time? How difficult is it for you to hold a pen and write?
- Do you use a mobile phone to communicate with others? How do you send WhatsApp messages or make calls? Are your immediate contacts on speed dial?
- Do you face problems in voice inflexions or is it in a flat monotone?
Section 3: Your mood
- Do you feel anxious, stressed, depressed? What things make you feel this way?
- Do you have problems in remembering simple things?
- Do you feel understood by your family members? Are they supportive of you?
- What kind of things interests you in life?
- Do you exercise? What kind of exercise do you do?
Section 4: Your treatment
- Do you remember to take your medicines on time?
- What medicines do you take? How often and in what dosage?
- Do you have difficulty in opening the tablet or bottle?
- Do you face any effects of the medicine, any new symptoms that were not there before you started taking medicines?
Section 5: Non-Physical symptoms
- Do you drool? Do you experience dryness of the mouth
- Do you face difficulty in swallowing
- Are you experiencing constipation?
- How often do you urinate?
- Are you experiencing difficulty in smelling things?
- Do you have nausea or a feeling of sickness?
- Do you still have an interest in sex?
- Do you suffer from insomnia?
- Are you suffering from excessive sweating?
Use the above questions to record things in your diary on a regular basis. Keep this diary to show your doctor next time you meet up with him.