Aware of Huntington's Disease: Part 2

For years we explained Tourette Syndrome to Lacy's teachers and caregivers.  Lacy was always the extreme example of behavioral and neurological symptoms.  Lots of tics, lots of troubling behaviors and difficulty getting through school.  We did it, though, and Lacy graduated from high school in 1995.

Not long after graduation, we moved Lacy to a group home about 2 hours from where we lived.  While it was initially a gut-wrenching decision, the change we saw in our son was incredible.  He blossomed as part of a community of his peers, and he began to develop his own ideas and preferences from food to fashion.  We were excited to see Lacy grow so confident.  After a couple of years, we were able to move him to a group home just a few miles from home.

By this time, Lacy was in his early 20s, and his behavior became more of a problem.  He began stealing from residents, and having outbursts of anger.  He perseverated on ideas and things.  We worked with his group home to find ways to reward his appropriate behavior.  It seemed that he would do well for a while, then would slip back into bad habits.

In 2005, Lacy's difficulties escalated.  He seemed not be able to control his behavior at all, even though he wanted to do so.  In the late fall, Lacy had a grand mal seizure, and was sent to the hospital.  The seizure was almost like an exclamation point to the last stormy months.

Lacy's psychologist spoke to us shortly after this first seizure.  He thought, as we did, that the seizure was indeed some kind of indication that there was something going on in Lacy's brain, and that we would one day find out what that "something" was.

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