Partners in Parkinson's

It's important to manage your identity with Parkinson’s disease.

Identity and autonomy are important issues for people with Parkinson’s disease. Ask yourself – Who am I? How do I see myself? How do my family members and care partners see me? In answering this, if you find that you have let Parkinson’s disease change and re-define your self-image – don’t!

In life, everyone faces different challenges and conditions but this does not change who you are. You are still you. We often see ourselves as others around us see us. If Parkinson’s disease causes more reliance on family and care-partners, then these caring members of your support team may start relating to you differently. They “see” Parkinson’s disease not you. Have you and your family allowed Parkinson’s disease to color how you see and relate to each other? If so – don’t! This doesn’t mean that you shouldn’t accept help from your care team. Accepting help is not a sign of weakness, but don’t let the help they provide become the only way you relate to one another.

Important research in this area suggests that successful management of your identity with PD is facilitated by communication with your family and care partners. Together you must strive to prevent Parkinson’s disease from re-defining your relationships. It is important to:

• Communicate with your family and friends the importance of how they relate to you as they have – and not as a “patient”
• When possible, strive for normalcy for you, family and support people

Autonomy – In healthcare, Autonomy is recognized as a principle of the right to self-determination. This principle is rooted in respect for individual’s ability to make informed decisions about personal matters. It can be an indicator of health as many health conditions may cause increased reliance on others and potentially challenge autonomy.

Self-image is often defined by relationships. Thus, success in managing your identity with PD and maintaining a sense of autonomy and control of your identity is brought about through ongoing open and honest communication with your family and care-partners. Together you must work toward maintaining the relationship you had before PD.

You can also maintain your identity by continuing to engage in activities that are enjoyable and meaningful to you. You may need to make some adjustments and accept that some activities may take a little longer to accomplish but in most cases you can continue to do the things you like to do. You should not give up just because it is more difficult. You may have PD, but it doesn’t have you!