Parkinson's Disease: Establishing Treatment Goals
Questions to Consider Periodically
Your Parkinson’s disease - and its symptoms - will change over time. Your approach to managing it should change as well. Evaluate your overall disease management by asking yourself the following questions on a regular basis:
- What are my priorities now?
- Are my treatments effective for me?
- Do medication side effects interfere with my daily life?
- Have important activities become more difficult or impossible for me?
- Have I stopped doing the things I enjoy because of Parkinson’s disease or complications of my treatment?
- Have my interactions with friends or family changed because of Parkinson’s disease?
While early diagnosis
and appropriate treatment
are key to taking charge of Parkinson's disease (PD) and continuing to stay active. It’s also important to remember that you can also help manage your Parkinson’s disease with non-medicinal therapies and lifestyle changes
Managing all the aspects of life that can be affected by Parkinson’s disease PD can get complicated. Creating a game plan will help you approach your well-being holistically and provide structure to balance your Parkinson’s disease management with your lifestyle and other personal needs.
Start by considering your priorities. Think about the things you value most in your daily life. These might include:
Discuss your priorities with your family and healthcare team. Consider how your health-related decisions could impact your priorities and seek treatments that provide effective symptom management.
As the disease progresses, consider seeking therapy to help compensate for any changes in your physical abilities, speaking voice, handwriting, or other issues that may impact your daily life. Commit to doing whatever you can to lessen the impact of issues that interfere with the things that are important to you.
Maintaining Your Emotional Well-Being
Living with Parkinson’s disease brings a range of emotions, and taking care of your emotional health is as important as taking care of your physical health. Support groups are a great way to cope with some of the emotional challenges of living with Parkinson’s disease. A Parkinson's disease advocacy organization
can refer you to a group in your area.
The feelings associated with Parkinson’s disease are often complicated by depression: As many as half of people living with Parkinson’s disease may experience clinical depression at some point. Occasional feelings of sadness or discouragement are normal, but you should watch for signs that you may be experiencing clinical depression and discuss them with your doctor.
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Staying Engaged: Hobbies and Interests
Hobbies are an important part of life, and they should be a priority when it comes to managing your Parkinson’s disease. Make time for your hobbies and interests, and talk to your nurse or doctor if Parkinson’s disease symptoms or medication side effects interfere with your ability to do them.
Though some skills may become more difficult as Parkinson’s disease progresses, there are things you can do to continue the activities you enjoy:
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- Bring a buddy. Invite a friend or family member to participate in your hobby with you and allow her or him to help as needed.
- Look for adaptive equipment. If not readily available for your hobby, consider enlisting a specialist to create an adaptive tool for you. Organizations such as AbleData, the Adaptive Sports Association, or the National Sports Center for the Disabled may get you pointed in the right direction.
- Expand your interests. Try new activities that may be less physically challenging, or find new ways to participate. If you can’t participate in the traditional sense, perhaps you can teach, officiate, or coordinate events.
Parkinson’s Disease and Work
For many with Parkinson’s disease, continuing to work is not only important for financial reasons, but also to help maintain a sense of independence and self-worth. The good news is that most people are able to continue working for some time after their Parkinson’s disease diagnosis. As time goes by, your physical symptoms may start to cause challenges with some of your work activities, but there are steps you can take to minimize their impact:
Know which times of day your medications are most effective and plan to work on your most challenging assignments during these windows of “optimum performance.”
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- Arrange your workspace for efficiency and ease.
- Discuss alternative work arrangements with your employer, such as consulting or reduced hours.
- Address workplace accommodations that may allow you to remain on the job.
- Know your rights under the Americans with Disabilities Act. You can learn more at www.eeoc.gov. You may also take advantage of the Family and Medical Leave Act (FMLA) if your appointments are jeopardizing your or your caregiver’s career. Go to www.nationalpartnership.org to learn more.