Terri Corcoran is a boomer (61) and a full-time caregiver for her husband who has been severely disabled mentally and physically for most of their marriage, which is still going at 13 years (second marriage for both). He has a genetic neurodegenerative condition called Fragile-X Tremor Ataxia Syndrome (FXTAS).
She will also tell us about her husband's condition, FXTAS, which was not discovered and identified by researchers until 2001. It took 5 years to diagnose him correctly - it is not an uncommon condition which can begin in the 50s - but many people do not know about it, and it is not properly agnosed. If suspected, it can be diagnosed easily with a DNA test.
Terri has written and spoken about the tremendous challenges of spousal care giving. She must not only provide intensive care, but has virtually lost communication with her husband. She has done well, though, by the grace of God and the Well Spouse Assn. She will tell us about the Well Spouse Assn., a non-profit, peer-to-peer support organization, providing emotional support and other resources for spousal caregivers - it is the only organization of its kind. Well Spouse are always trying to reach out to others in this very difficult situation, so they can find that they are not alone; of course, many the members are Baby Boomers.
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