Walkers and Wheelchairs
There comes a time in the course of Huntington's Disease when the person who suffers must begin to use assistive devices such as canes, walkers, shower chairs, and wheelchairs. I think this must be a time that every family faces with apprehension.
When Lacy was first diagnosed with HD, I immediately began to dread the time when he would need a walker or a wheelchair. I felt as though this would be the hardest milestone - and not a good one. However my perception has changed drastically. I now see Lacy's walker, and the motorized wheelchair we have ordered for him, as the means to give him continued mobility.
It was difficult to convince Lacy that he needed a walker. Up to now, he has rejected any conversation about his health. Instead, he has attributed his muscle weakness and increased number of falls to someone plotting against him. Recently Lacy has made friends with his walker, and is accepting of his need for the support.
We took Lacy recently to be fitted for a wheelchair. I had envisioned a wheelchair as just the straight up regular push kind, but the occupational therapist who assessed him recommended a motorized wheelchair. Lacy would be able to drive it himself for a while via a joystick on the right arm of the chair, but it could also be driven from the back.
Kenny and I were skeptical when Lacy sat in the "floor model" and we asked him if he wanted to drive the chair. To our surprise, he nodded yes, and began a trek down the hallway with a grin a mile wide on his face. "I'm going to get a new wheelchair!"
Two years ago, I would not have believed that I would be smiling and laughing and almost crying seeing my son in a wheelchair. I had focused so much on the impact it would have on me, that I hadn't considered how Lacy would feel to be that free to move around.
When we care for someone with HD, we hurt for our loved one, and want to take away the pain of the decline. Using assistive devices can lessen the feelings of helplessness. My greatest fear was actually a moment of joy and happiness. My son still has the ability to move around and will be able to do so for much longer. He can be independent again. That is a gift.
When Lacy was first diagnosed with HD, I immediately began to dread the time when he would need a walker or a wheelchair. I felt as though this would be the hardest milestone - and not a good one. However my perception has changed drastically. I now see Lacy's walker, and the motorized wheelchair we have ordered for him, as the means to give him continued mobility.
It was difficult to convince Lacy that he needed a walker. Up to now, he has rejected any conversation about his health. Instead, he has attributed his muscle weakness and increased number of falls to someone plotting against him. Recently Lacy has made friends with his walker, and is accepting of his need for the support.
We took Lacy recently to be fitted for a wheelchair. I had envisioned a wheelchair as just the straight up regular push kind, but the occupational therapist who assessed him recommended a motorized wheelchair. Lacy would be able to drive it himself for a while via a joystick on the right arm of the chair, but it could also be driven from the back.
Kenny and I were skeptical when Lacy sat in the "floor model" and we asked him if he wanted to drive the chair. To our surprise, he nodded yes, and began a trek down the hallway with a grin a mile wide on his face. "I'm going to get a new wheelchair!"
Two years ago, I would not have believed that I would be smiling and laughing and almost crying seeing my son in a wheelchair. I had focused so much on the impact it would have on me, that I hadn't considered how Lacy would feel to be that free to move around.
When we care for someone with HD, we hurt for our loved one, and want to take away the pain of the decline. Using assistive devices can lessen the feelings of helplessness. My greatest fear was actually a moment of joy and happiness. My son still has the ability to move around and will be able to do so for much longer. He can be independent again. That is a gift.
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