Our Blog

Living With Parkinson’s Disease: Redefining Yourself Through Support

by Shannon, November 26, 2018

A diagnosis of Parkinson’s Disease can signal a variety of emotions. In fact, many times, people with Parkinson’s feel as if the disease defines them completely. However, while living with Parkinson’s, what you soon find is that how you define yourself depends on the positivity and support in your life. In this article, as part of the Care Indeed Parkinson’s series, you wi ll learn how to find the positivity and support you need to cope, redefine yourself and overcome daily obstacles. 

How to Redefine Yourself

With more than one million people affected by Parkinson’s in the United States, you may feel like you are part of a labeled group, yet the alternative is to view yourself as someone who is not alone. As you are coping with the changes in movement, rigidity and tremors physically, you are also likely to experience depression and anxiety, especially at the onset of the disease.

You don’t have to be defined by the disease, though.

If you feel lost within the confines of the disease’s ailments and symptoms, it helps to take an inventory of how you once viewed yourself. For instance, if you once,were a sociable person and enjoyed parties, but you now find yourself straying from interactions with others because of Parkinson’s Disease, you can still have the best of both worlds.

Here’s how:

  • Surround yourself with family and friends who understand how Parkinson’s affects your physical and mental state
  • Encourage family and friends to include you in social engagements, yet explain how the disease may affect your ability to join in all activities
  • Become the host or hostess you have always wanted to be and plan a game night for members of your support group
  • Find alternative ways to communicate with others, such as audible recordings you can send back and forth to one another

While it may be hard to think of anything other than how Parkinson’s Disease has affected you, it’s also important to remember who you were before the diagnosis and who you still are in present day. Experiences, ailments and obstacles do change your world, but deep down, you can still uncover and remember who you are as a person while coping with Parkinson’s.

For some, the key to rediscovering who they are revolves around perspective and positivity. Even just a simple conversation with another person who understands and has been through the type of pain you are experiencing can be eye-opening.

Rediscover who you are with baby steps and a clear plan:

  • Challenge Yourself With Honest Questions: Rediscover yourself by defining what you are passionate about. Ask yourself, “What talents do I possess that I can share with others?”
  • Learn to Be Okay with Good: You are not always going to be at your best when coping with Parkinson’s Disease; however, you can be good. Learn to recognize when emotional or physical challenges are going to restrain you from being the ‘best,’ but also celebrate when you have the strength to be ‘good.’ 
  • Explore Unchartered Territory: Even if you’ve strayed from taking risks in your life, challenge yourself to try things you have never done before. It might be scary to try out a new hobby or even launch a new career while struggling with physical and emotional pain, but if you don’t try, you will never discover more about your true self. 

How to Make Positivity a Priority

It’s easy to get bogged down in despair when diagnosed with Parkinson’s Disease, but if you take intentional steps to change your frame of mind, it can help you to cope and even enjoy the victories of each day.

Scientific studies have also shown the power of positivity. A 2016 Harvard study published in the American Journal of Epidemiology  found that psychological resilience may make a difference for individuals struggling with health conditions and diseases such as Parkinson’s.

According to Eric Kim, research fellow and co-lead author of the study, the findings suggest that people should “make efforts to boost optimism, which has been shown to be associated with healthier behaviors and healthier ways of coping with life challenges.”

Start by celebrating the small victories. So maybe you weren’t able to work an 8-hour day, but if you made it through 4 hours, relish in this victory. If you struggled to walk down the block, but made it to the mailbox and back, celebrate the victory. Focus on what you CAN do with Parkinson’s versus what you CAN’T do each day. 

Another way to remain positive is to surround yourself with others who are full of positivity. Negative people can bring you down within seconds and cause you to doubt your abilities, dreams and goals. Members of your support group, though, have your needs in mind and will try and lift you up.

On days when you’re not feeling your best, branch out and do something you love to remain positive. Catch a show at the movie theater, visit with friends you have not seen in a while or snuggle up on the couch to read a new book. When your mind is occupied with your passions, positivity fills your body, too.

How to Embrace Your Support System

Beyond embracing the love and support you receive from your family and friends, Parkinson’s aids for national support are also essential for your health and well-being.

Consider the following resources to help ease your mind when you have questions and need additional support:

The Parkinson’s Foundation Helpline: The Parkinson’s Foundation offers a wealth of information for both patients and caregivers. This helpline is staffed by therapists, social workers and nurses who understand the challenges you are facing. You can contact the helpline for information about:

  • Symptoms and treatments
  • Current disease information
  • Emotional support
  • Health and social care
  • Referrals for community resources and health professionals

The Edmond J. Safra National Parkinson's Wellness Initiative: This initiative has led to networks of support at Jewish Community Centers throughout the U.S. and is open to all people affected by Parkinson’s Disease, regardless of their religious affiliation. The goal of the initiative is to improve quality of life for those affected by Parkinson’s.

Smart Patients Parkinson’s Disease Community: In partnership with the American Parkinson's Disease Association, the initiative for this group is to provide an online forum and community for people with Parkinson’s Disease and their caregivers, family and partners. The peer-to-peer support is often preferred as individuals offer their own experiences with symptoms, treatments and strategies to lead a positive and productive life with this disease.

Life with Parkinson’s Disease is challenging and learning how to accept the challenge is the first step in living life. While you may struggle with despair at times and even have moments of grieving, the support you need is only a click away.

Care Indeed is committed to providing you the support and in-home caregivers who understand your challenges and daily struggles at work and home. Learn more about how to get the support you need while living with Parkinson’s Disease today

Reach out for more information