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Living with Parkinson's

Making a Plan

Making a Plan

As every person with Parkinson’s is different, each person can benefit from planning for the future in a way that takes their unique preferences, support network, and stage in life into consideration. Though no one can predict the future in an exact manner, it helps to stay educated on the disease, plan for the unexpected and know your resources.

Gather Information

A Movement Disorders specialist can help you understand your symptoms better, and answer questions about what may be ahead for you. Some people like to learn more details about disease progression than others – talk to your doctor about how much information you prefer to know.

Parkinson’s education programs help attendees understand specific symptoms and treatment options in more depth. By attending a class, listening to a webinar, or connecting to find trusted information on a topic, you can feel more equipped to handle even the most challenging of symptoms.

Learn about what’s available in your community, including general resources for people living with disabling conditions like PD. By researching ahead of time, this saves you from stress that you may encounter learning while under the pressure of a crisis or new circumstance.

Control Your Disclosure

For many, the process of getting diagnosed with Parkinson’s is a long and confusing one, taking months or years and visits to multiple specialists along the way. If you’ve received a recent diagnosis:

  • Consider talking to those closest to you first.
  • Keep in mind that there are many misconceptions about the disease. People with PD find that after they disclose that they have PD, they receive unsolicited stories, advice, and treatment recommendations from well-meaning friends and family members.
  • If you are working, take your time to think about the pros and cons of disclosing your diagnosis to your employer right away. Even if you need an accommodation to your schedule or tasks because of PD, your employer may not need to know specifics about your diagnosis.
  • Short-term counseling while you in the process of disclosing your diagnosis can help you sort through the challenges you may encounter.

Practice Resilience

Those who live well with Parkinson’s learn to actively take control of their treatment and lifestyle.

Forming health habits like daily movement and exercise, taking medication regularly, or keeping a healthy diet all take practice and support. Give yourself time to make changes, and ask for help if you need it along the way.

Scheduled activities are often easier to maintain than activities that you do independently on your own schedule. For example, people with Parkinson’s often find that they can stick with an exercise regimen that includes group exercise classes. Group exercise also has the added benefit of providing a social outlet.

Parkinson’s Support groups are a great way to share ideas about approaches to different changes or symptoms associated with the disease.

Check into whether your area offers a class titled “Living Well with Chronic Conditions.” This class has proven benefits of helping attendees maintain independence and quality of life.

Lean on your community

Being uncertain or scared after a diagnosis of Parkinson’s disease is a common emotion, and not one you need to rush to brush off or dismiss. However, you are hardly alone, nor must you manage the implications of this diagnosis alone. Tap into your peer community at a support group (maybe seek out one for newly diagnosed) where you will find a source of information and support from those who have been in your shoes. Lean on your family and include them in your appointments. And, call PRO if you find it would be helpful to talk in person or over the phone.

Have a question?

Your peers might have the answers

PRO sponsored support groups are a great resource when you need support or help navigating community resources and care options. Hear from others what has worked for them and collect ideas for your own situation. Find a support group near you.

Have a question?

Your Peers might have the answers

PRO sponsored support groups are a great resource when you need support or help navigating community resources and care options. Hear from others what has worked for them and collect ideas for your own situation. Find a support group near you.