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Showing posts from March, 2017

The Long Walk: A Huntington's Disease Story

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     He walked up the long driveway along the edge of a forest that runs along a rippling stream.  He wonders what awaits him as he returns home from school.  His heart and stomach feels the dread as his brain tells him of what he may find.  He really has no idea.  It could be a fall, or a mess to clean up that he won't know where to begin with.  And it could always be, well, he didn't want to think about that.  He wonders why he has this burden at such a young age, at a time when his friends were all out enjoying themselves. Why couldn't he?       It all was just so unfair and it didn't have to be this way.  His sisters could have taken up a bit of slack but that was not going to happen.  He knew it and his father knew it.  He was tired, almost as tired as his father who was gone 14 hours per day to work.  His mother wouldn't accept outside help and didn't want anyone in the house.  She no...

Destination unknown: A Huntington's Disease Story

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      I miss her.  Yes, I see her everyday with the exception of a couple of days while I was ill with a virus.  I stayed away to protect her, but I miss her, the essence of her, her presence. I miss what once was but I also miss caring for her. I miss her scent, and even all the troublesome things she would do. The last three months have been horrific and up until a few weeks ago when we began treating her with CBD oil I really felt I was fighting a losing battle, but with those improvements have come decisions as to where do we go from here?      For those of us in the HD community, and those of us as humans in general it is something that we all struggle with when a loved one becomes ill and that illness is terminal.  Most of us though, tend to think of nursing homes as a place that we may end up in when we grow old, especially if we don't have a family that is able to care for us.  For most of us even the thought of dealing wi...