Adjusting to life with Parkinson’s disease can be challenging. Not only is your physical health changing, so is your mental and emotional health. Having feelings of anger, resentment, or anxiety, or feeling discouraged and depressed is normal. It’s also normal to find yourself facing a resurgence of these feelings after you experience a setback in your disease treatment—maybe a new symptom is affecting your life, or a medicine you need causes severe side effects. Building a network of caregivers, both family members and healthcare professionals, can help you prepare for the progression of the disease and the day-to-day challenges you’ll face over time.
You are not the only one affected by a Parkinson’s disease diagnosis; it has an impact on your entire family. At some point during your disease progression, you will likely have to call on your family for help. Once you receive a Parkinson’s disease diagnosis, it’s a good idea to start planning how you will be cared for—especially once you begin having trouble caring for yourself.
Establish who will be your primary caregiver. In most cases, this will be a spouse, parent, or child. It may also be a sibling, cousin, or friend. Initially, the primary caregiver’s role may be one of support—going to doctor’s appointments, helping you research the disease, making plans for the future. But as Parkinson’s disease progresses, the primary caregiver’s role may transition to one more like a nurse or a hands-on healthcare provider. He or she will likely prepare your food, help you bathe, and be involved in many other day-to-day life events that will become increasingly difficult. Your primary caregiver will also be your constant companion. For many families, this experience can greatly rewarding, a chance for partners, family members, and friends to come together as they face the challenges of the disease head-on.
Some friends or family members may be more comfortable helping with errands, providing dinners, or transporting your kids. These gestures can be a welcome form of care giving. Keep a list of errands, appointments, or other services friends can provide to help you or your primary caregiver.
Find a Support Group
Your friends and family are your greatest allies in Parkinson’s treatment. However, you might find it more beneficial to speak with people who have experienced or are experiencing the same things you are. Talking to other people with Parkinson’s disease may help you feel less alone in this journey.
In addition to the emotional care provided by a support group, talking to other people with Parkinson’s disease can help you prepare for your treatment and care. A support group can be a significant information resource from people who have the disease and their families, as well as healthcare providers. Support groups can also provide a safe atmosphere for discussing struggles and complications—you will quickly see you are not alone in the challenges you’re facing.
Ask your doctor or local hospital’s health outreach office for contact information for a local Parkinson’s disease support group. Also, check to see if there is a support group for Parkinson’s disease caregivers. You may wish to provide your primary caregiver with this information, as support groups can be beneficial to everyone in the care-giving arena. Support groups may meet once a week, once a month, or less frequently. Support groups can be a wonderful way for families facing the same struggles to connect with one another and provide a place to turn during trying times.
See a Counselor
The decision to seek counseling can be an important step in your acceptance and treatment of Parkinson’s disease. You may find you’re better able to address concerns or problems you’ve experienced if you’re talking in a safe, open environment—such as with a trained mental health professional. Talking one-on-one can help you feel more comfortable expressing your feelings, fears, and frustrations, and you may receive better, more specific information that can help you in your journey toward accepting your disease.
A caregiver also faces a great emotional and mental toll as a result of around-the-clock care-giving. For that reason, it’s also advisable for your caregiver to seek out a mental healthcare provider. Meeting with a therapist or counselor can help your primary caregiver accept his or her new role and express any frustrations, fears, or concerns he or she may have for your future.
Get More Information
Several Parkinson’s disease organizations and advocacy groups exist. Their functions vary from fundraising for research to connecting newly diagnosed patients with one another as a source of strength and understanding. Below are several of the organizations nationwide that can be a valuable asset to you and your family:
Parkinson’s Disease Foundation (PDF)