Research shows that people who education themselves about their illness and learn how to manage it do better and have a better quality of live over time. You have a key role in making sure your Parkinson’s is well managed.
Build a good relationship with your healthcare team.
The best management of Parkinson’s is based on shared decision making between the person living with condition and their doctor.
Tell your doctor or Parkinson’s about the symptoms that are concerning you, even if you are not sure that they are related to Parkinson’s. It might be useful to write them down in advance of your meeting.
To get the most out of your time with healthcare team try some of these tips
Make a list of what you want to discuss, you could give it to your doctor at the start of your appointment to make sure you discuss each concern.
Try to be open and honest
Tell your doctor the real story about how you are and don’t take extra medication before your appointment, he or she can only give you the best possible treatment if they know what is going on.
Tell your doctor how you are doing
- Share all your symptoms, even if you don’t think they are related to Parkinson’s
- Perhaps bring a diary of symptoms
- Bring medication you’re currently on if you are taking lots of medicines
- Tell the doctor about any appointments you have had with other doctors or specialists
Ask questions if anything is unclear
If the doctor says something that you don’t understand, ask them to explain it to you, make sure you understand any changes in medications, why you are taking it and how and when to take it.
Make notes to help you remember. It can also help to include a family member or care partner during clinic visits, four ears are better than two!
Take you medication as directed
The more predictably and reliably you are taking your medications, the more predictable and reliable your Parkinson’s will be. Perhaps set an alarm if you need to.
Keep a diary
Keep track of your medications and when you need to take them (long with your food, exercise and symptoms) can help you feel involved in your treatment.
Bring it along to help jog your memory for your visit to your neurologist if they ask about how your medication is working for you.
Stay informed about Parkinson’s
The Parkinson’s association of Ireland has a wealth of information available through its website at www.parkinsons.ie and via its free phone helpline on 1800359359 open 9am to 7pm Monday to Thursday and 9am to 5pm Friday.
Meet others in a similar situation
Being able to talk to other people who are going through similar things can help you to feel like you’re not alone with the condition.
Contact the Parkinson’s association of Ireland to find out about local support groups.
Do what you can when you can
There may be times when you need to rest and can’t take part in social activities. Don’t be too hard on yourself when this happens – sometimes you need to be more realistic in setting goals and accepting your limitations.
Maintain as normal a routine as you can – physically, emotionally and socially – even if you can’t go far from home.