Faces of Huntington's
This week I have been working on a short essay for the HD Society - Faces of Huntington's. I'll be writing about Alan and how HDSA has helped us and how we have connected with the HD community.
I'll post my essay here when I finish it, with photo as well.
A few months ago, we found a video that detailed a family's struggle dealing with HD. The husband and father of the family had been afflicted. So many of the difficulties they experienced we are also dealing with in our family. Behavior issues, mobility and coordination issues, feeding and personal care issues. The list goes on and on. Eventually, the family had to move their loved one into an assisted care facility. Even though Alan is now in a waiver program, we need to begin putting out feelers for nursing homes. The loss of mobility and ability to feed, dress, and groom himself will mean he needs more specialized care, and we'll need to be ready for that.
Behavior issues keep us from taking Alan out most of the time. We recently had a very dicey situation at a local McDonalds when Alan initially refused to leave with us. Standing by the door, we struggled with him, trying to move him out of the way. Patrons inside the restaurant were worried. Kenny finally took Alan's milkshake away from him, and I used it as bait to lure him into the car.
We're not unique here. There are many, many families that are dealing with the same issues. We feel fortunate because we have so much support from family, friends, and the medical community. That is not so for everyone, of course.
Alan is safe today and at his apartment. Perhaps we are even "beloved parents" today.
I'll post a link to the "Faces of Huntington's" area on the HDSA website. There will be other "faces" on there as well.
I'll post my essay here when I finish it, with photo as well.
A few months ago, we found a video that detailed a family's struggle dealing with HD. The husband and father of the family had been afflicted. So many of the difficulties they experienced we are also dealing with in our family. Behavior issues, mobility and coordination issues, feeding and personal care issues. The list goes on and on. Eventually, the family had to move their loved one into an assisted care facility. Even though Alan is now in a waiver program, we need to begin putting out feelers for nursing homes. The loss of mobility and ability to feed, dress, and groom himself will mean he needs more specialized care, and we'll need to be ready for that.
Behavior issues keep us from taking Alan out most of the time. We recently had a very dicey situation at a local McDonalds when Alan initially refused to leave with us. Standing by the door, we struggled with him, trying to move him out of the way. Patrons inside the restaurant were worried. Kenny finally took Alan's milkshake away from him, and I used it as bait to lure him into the car.
We're not unique here. There are many, many families that are dealing with the same issues. We feel fortunate because we have so much support from family, friends, and the medical community. That is not so for everyone, of course.
Alan is safe today and at his apartment. Perhaps we are even "beloved parents" today.
I'll post a link to the "Faces of Huntington's" area on the HDSA website. There will be other "faces" on there as well.
Comments
Post a Comment