Coping and support
Living with any chronic illness can be difficult, and it’s normal to feel angry, depressed or discouraged at times. Parkinson’s disease, in particular, can be profoundly frustrating, as walking, talking and even eating become more difficult and time-consuming.
Depression is common in people with Parkinson’s disease. But antidepressant medications can help ease the symptoms of depression, so talk with your doctor if you’re feeling persistently sad or hopeless.
Although friends and family can be your best allies, the understanding of people who know what you’re going through can be especially helpful. Support groups aren’t for everyone. However, for many people with Parkinson’s disease and their families, a support group can be a good resource for practical information about Parkinson’s disease.
Also, groups offer a place for you to find people who are going through similar situations and can support you.
To learn about support groups in your community, talk to your doctor, a Parkinson’s disease social worker or a local public health nurse. Or contact the Parkinson’s Foundation or the American Parkinson Disease Association.
You and your family may also benefit from talking to a mental health professional, such as a psychologist or social worker trained in working with people who have chronic conditions.
Preparing for your appointment
You’re likely to first see your primary care doctor. However, you may then be referred to a doctor trained in nervous system disorders (neurologist).
Because there’s often a lot to discuss, it’s a good idea to prepare for your appointment. Here’s some information to help you get ready for your appointment and what to expect from your doctor.
What you can do
- Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, vitamins and supplements that you’re taking.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all of the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions ahead of time will help you make the most of your time together. For Parkinson’s disease, some basic questions to ask your doctor include:
- What’s the most likely cause of my symptoms?
- Are there other possible causes?
- What kinds of tests do I need? Do these tests require any special preparation?
- How does Parkinson’s disease usually progress?
- Will I eventually need long-term care?
- What treatments are available, and which do you recommend for me?
- What types of side effects can I expect from treatment?
- If the treatment doesn’t work or stops working, do I have additional options?
- I have other health conditions. How can I best manage these conditions together?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend?
In addition to the questions that you’ve prepared to ask your doctor, don’t hesitate to ask questions that occur to you during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
- When did you first begin experiencing symptoms?
- Do you have symptoms all the time or do they come and go?
- Does anything seem to improve your symptoms?
- Does anything seem to make your symptoms worse?