Coping and support

Periods of feeling down about having primary lateral sclerosis are expected and normal. Dealing with the reality of an incurable, progressive disease can be challenging. To cope with the disease and its effects, consider these tips:

• Seek emotional support. Family and friends can be great sources of comfort and support when you're coping with the emotional aspects of long-term disease. Because PLS is an uncommon diagnosis, it might be a challenge to find a local support group for people with your condition. However, some online discussion groups are available. It might help to see how others cope with the disease. Your health care team may have some suggestions.
• Get professional help if you need it. When faced with a chronic illness, it's not unusual to become overwhelmed at times. Seek professional counseling for another perspective or if you have depression and need advice on treatment.
• Know and use resources available to you. If you reach a point where your disease is restricting your activities significantly, ask your doctor about devices designed to help you stay independent. In addition, there are social services available to people with disabilities of all kinds. Try to learn all you can about the resources available to you. Sometimes relying on your community for help can strengthen ties in new ways.