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The best advice is to reach out for support and information. Don't feel that you are completely alone, there are resources available and people who understand. Connecting with other families who are dealing with the disease will be your best source for support. Connections can be made through this disease map and also through the various Multiple System Atrophy advocacy organizations around the world. Here is one MSA discussion group open to anyone around the world: groups.yahoo.com/group/shydrager