Parkinson’s disease affects the whole family, not just those who are diagnosed. This is especially true if you are the primary caregiver for a spouse, parent or other loved one with the disease.
A spouse, adult child or other family member can play a significant role in helping a person with Parkinson's disease stay organized and receive the best care possible:
- Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinson’s disease. This specialized doctor is generally on the cutting edge of Parkinson’s disease care, and can help your loved one build a plan that works best for them. Use our Movement Disorder Specialist Finder to find a specialist in your area.
- Attend doctor’s appointments with your loved one. Doctor’s appointments can be overwhelming, and it’s helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.
- Stay organized with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.
- Keep a list of all doctors' phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.
- Familiarize yourself with the terms of your loved one's medical insurance. Know what services, including prescription medication coverage and therapy session benefits, are included. Talk with your physician about the long-term needs of your loved one, and make sure his or her current medical plan will meet those needs. Engage the services of a social worker if you need help navigating these issues.
- Understand the disease. You do not need special medical training to help at most stages of the disease, apart from the most advanced stages. Most caregivers are primarily called on to aid with daily tasks that may become difficult or impossible for someone with Parkinson's, and to provide ongoing emotional support. One exception: if Parkinson's causes trouble swallowing and therefore increases the risk of choking, knowing the Heimlich maneuver can be lifesaving.
- Exercise together. Besides medication, exercise is one of the most beneficial ways to help Parkinson's disease symptoms. Your loved one may be more likely to stick with a plan if you find an exercise you enjoy together.
