Support Group: Living life to the fullest

Last night was the second support group meeting we attended.  There were a couple of familiar faces and one new friend.  We talked a lot about Social Security, insurance, employment, and the long journey that is HD.

Everyone is trying to make the best of life, and that is what living is all about.  Staying independent, working as long as possible, and participating in life is the goal of everyone in our group, whether they be caregivers or those who have to live with the effects of HD on their bodies and minds.  

For some people that goal is best accomplished by working whatever temporary jobs become available;  for others, retirement and travel.  Planning for the future is foremost in everyone's mind.  What happens when the person with HD can no longer be cared for at home?  What about disability and medical insurance?

Lacy has lost interest in so many things that he once enjoyed.  For him, this loss of interest is not depression, but a kind of agnosia - those things no longer exist for him.  He doesn't miss them because they don't enter his mind.   He is happy, and enjoys seeing us for short visits here and there.  We don't ask too many questions because that makes him too confused.  He loves the people who care for him.  Yesterday, as I sat with him in the group home cafeteria, I was touched to see all the staff and residents' obvious care and love for Lacy.  They teased him about his new shoes ("Don't you go running off now!") and smiled at his bright grin.   

It makes us happy to meet and talk with people who are struggling like we are.  The positivity in our group is encouraging.  The smiles and laughter we share are priceless.  


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