Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness. Support groups exist entirely for you, the person with the disease, and your family or loved ones. Here is a list of some things disease support groups provide:
• A forum to share information and practical experience, whether it’s learning how to improve physical function, discussing new drug trials, or experiencing the latest augmentative technologies all geared to helping you live more fully with the disease.
• A safe place to allow your emotions to speak for you. The group offers an unparalleled opportunity to learn how other people cope with various problems similar to yours, to see that patients and family members are not completely unique, and that others experience the same type of feelings and emotions about the disease as you do.
• An educational gathering spot where speakers and caregivers address subjects of major interest and exchange; how to incorporate physical and occupational therapy into your life; how to counteract problems in swallowing and chewing; safeguards that can help you avoid pulmonary complications; and ways of coping with depression and caregiver “burnout”, among many other topics.
• A place to witness firsthand the constant miracle of people continuing to live productive, fulfilling lives in spite of having disease