1. Interact With Others Who Share the Condition
The most important thing a support group can provide is people with similar experiences who can talk with you about your condition. Isolation can be very dangerous to those afflicted with Huntington's disease. Depression is extremely common, and those coping with the condition sometimes constitute a suicide risk. Regular meetings with others who have Huntington's disease provide a social network to help deal with such emotions.
2. Provide Support for Friends and Family Members
People close to someone with Huntington's disease require support as well. Caring for an afflicted relative takes enormous emotional strength. Studies have shown an increase in depression and health problems for relatives and caregivers who ignore their own needs to tend to their afflicted relations. A support group can give them tips and resources on managing care more easily, as well as a community of people who share the same experiences.
3. Get Information on Care and Ongoing Research
Beyond the sense of community that a support group provides, it also makes an excellent resource for learning more about Huntington's disease. Well-established groups have connections to local doctors and care facilities experienced in dealing with the condition. Group organizers or members may be keeping track of updated medical research and can speak about the viability of new treatments. They can suggest local doctors who have proven particularly helpful or particular organizations who can help with a specific problem. Huntington's disease has an impact on every aspect of life, and proper care may include physical therapy, occupational therapy, nutritionists and neurologists, just to name a few. Local support groups can be a good resource to help find the best therapists to meet those needs.
4. Find Long-Term Support, Not Quickie Solutions
Properly established groups should have the right mixture of leadership and members who make you feel comfortable. They should provide a stable atmosphere that you can rely upon over the length of the condition--which can last for many years. Good groups will not be dominated by a few members, but will instead allow everyone to contribute and feel welcome. They should not charge unduly for membership, relying instead on either voluntary donations or a modest fee for providing snacks and other resources. Beware of groups that charge an excessive amount to belong, that seem to exist in order to sell a particular book or similar product or that offer a "miraculous cure" that no one else can. Generally speaking, the older or more well-established a support group is, the better.
