Awareness of Huntington's Disease Part 3

Five years after Lacy's seizure, we had moved to Northwest Arkansas.  When we'd first moved, we had been able to get him into a group home, but his behavior again became a problem.  In addition to the stealing he was now refusing to shower or change his clothes.  We often had to drive over to make sure he got into the shower, and it took a lot of convincing.  He was argumentative and difficult.

After all the progress he had made as a young adult, it seemed Lacy was losing ground in so many ways.  No longer interested in doing his laundry, or working in the sheltered workshop he had once enjoyed, Lacy spent his days pacing up and down in a cafeteria, looking at a clock every few minutes to keep up to date on the time.

Kenny and I wanted to find a better fit for Lacy, and just when we wondered where we would turn, we found LifeStyles in Fayetteville.  We applied to have Lacy accepted to the program, and we were thrilled when he was accepted.  Since there wasn't room in the apartments that he was eligible to live in, he lived with us for a couple of months until we could move him into an apartment with a roommate.

The staff at LifeStyles was committed to helping Lacy achieve his potential, but there were still many challenges.  He still refused to shower many times, and eventually had to have supervision 24 hours a day.  He'd often be awake all night, wandering the grounds and even standing in the rain when there was a storm.  Lacy had a phone, and many nights I would get over 20 calls from him all through the night.  I eventually had to turn my phone off at night to be able to get some sleep.  When Lacy started calling the police to report that someone was trying to kill him, we had to remove the phone from his room.

When it seemed that there couldn't be any more problems, Lacy's caregivers began to report what they thought were seizures at various times of the day.  We were, of course, concerned, and made an appointment with a neurologist.  Lacy had been on seizure medication since that first grand mal seizure 5 years ago.  Maybe he needed to have a different dosage or medication.

I took Lacy to the appointment and began to fill our the paperwork.  I remember the moment when the symptoms created a pattern that I couldn't ignore:

personality changes
losing interest in activities once enjoyed.
unusual movements....

At that moment, I knew, before we had any medical confirmation.   Lacy had Huntington's Disease.


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