Parkinson’s disease doesn’t only affect your body. Dealing with a daily illness can also be hard on your emotions. But it’s important to remember that you’re not alone. Many people experience feelings of anxiety or depression as they cope with living with a chronic illness or disease.
Some research suggests that people who have Parkinson’s may actually be more likely to experience anxiety and depression compared with people in the same age group who don’t have the disease. Over time, Parkinson’s can also cause problems with memory and thinking as well as trouble sleeping.
In addition to those who treat your physical health, your care team should include specialists and others who take care of your mental health. Don’t be afraid to ask for help. There are also lots of resources to support both you and your family.
Here are ways to reach out and get the support and care you need.
Speak with a social worker
A social worker is an important part of your care team because they can help you get access to a variety of other resources you may not know are available. You can find a social worker through state programs like Medicaid and through the Department of Aging.
You may visit with a social worker during a trip to a treatment center — some work in clinics and hospitals — or schedule appointments with them separately. They will meet with you and talk to family members involved in your care as well. The social worker’s job is to make sure you and your family are getting the help you need and adjusting to living with Parkinson’s.
Once they start working with you, they are likely to take an active role in your care. Social workers can help you schedule appointments with other specialists and address health insurance issues. They may also make different living arrangements for you if you require more care than can be provided at home.
Sometimes you and your family may not notice the need for a change in your care or living situation. A caregiver, particularly one who is a relative, may also not know when to seek help if they’re feeling tired or overwhelmed. Social workers can help everyone to address these issues in a healthy way and make sure you and your family feel supported.
Attend therapy sessions
Meeting regularly with a therapist can help you process the feelings that come with having Parkinson’s and learn healthy ways to manage anxiety and depression. Therapy sessions can happen with a social worker, psychologist, or psychiatrist. You can ask your doctor to give you a referral or make recommendations.
Parkinson’s can cause changes in your mood and thinking patterns. It can also affect your sleeping patterns. When this happens, therapists can teach you techniques to help manage symptoms and improve sleep quality. A psychiatrist is able to prescribe medications for anxiety or depression.
Another specialized therapist you may see is a neuropsychologist. They are trained to know the way your brain is structured and to evaluate how thinking and behavior are connected. They’ll look for changes in the way you process information, react to things, and pay attention. The neuropsychologist may talk with other members of your care team to recommend changes in your treatment.
Find a support group
Support groups offer a different type of connection. They’re a place where you can meet others who are going through the same thing. It’s a safe space to talk about your worries with other people who understand. Joining a group may not be for everyone, but many have found it to be helpful.
You can often find support groups through organizations like the National Parkinson’s Foundation or the Michael J. Fox Foundation. There’s usually a number to call on their website or a search function to find groups near you. Another way to find a group is to ask your doctor or social worker.
In-person groups may meet at a hospital, clinical facility, community center, local religious center, cafe, or someone’s home. They can range in size and membership. Small and in-formal groups might be led by others with Parkinson’s who just want to meet and share their experiences. A larger group may hold regular meetings and be led by a social worker or psychologist.
If you aren’t able to attend a group meeting, there are lots of online support groups. You can find closed groups on Facebook that are only open to people with Parkinson’s and their family members. People join to share their stories, talk about daily struggles, and offer suggestions and support to each other. Joining an online group gives you the advantage of talking to people in different parts of the country.
Be open with friends and family
You may not feel comfortable talking to everyone about Parkinson’s, but you should try to be open with close friends and family members. People often want to help, but they don’t know what to do. Tell them how they can be helpful and supportive.
If a person lives with you or is involved with your care, it could be helpful to attend therapy sessions together. There are also support groups for caregivers where they can get additional help.