《huntingtong's chorea》內容預覽
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《huntingtong's chorea》內容簡介：

“My husband knew he had a 50% chance of inheriting the disease from the age of seven. We married at age 35 and he kept the ravages of the disease to himself. I noticed then, 21 years ago that his foot moved most of the time. I also noticed he did not swing his arms when walking, hiking, ect. While working on my Master’s Degree in Counseling, my research led me to information on neurological disease and a chill went up my spine when I read of tics and inability to move arms when walking. I tried to talk to him about it, but he turned his back to me and didn’t talk. Finally, from a niece who developed HD young and rapid progression, I was able to learn from a previously estranged sister in law the whole family history. I knew in my mind and heart my husband had inherited the disease. He was becoming depressed and lost three jobs in succession. Now, it is 21 years later since I noticed his foot moving. He is bedridden, incontinent, has pureed food, etc. He cannot walk and his speech is slurred past recognition.
The saddest part is that he stays angry and will lash out with no warning. I have been hit many, many times just trying to help him eat or change his depends. I have an aide in the morning hours. He gets along with her.
However, this service is expensive and deleting our savings. I have had back surgery from lifting him and now I need a total knee replacement but can’t leave him with anyone for three days hospitalization. This disease affects the family and the caregiver, which is myself. I know it is a horrible life my husband is living and I do not complain.
I have tried four different nursing homes but his violent behavior has caused him dismissal. I love him dearly and really do not want him placed in a State Hospital where he will not have all the attention, good food, careful inspection for bedsores and medicine pulverized in his favorite puddings. At this point, I am at my wit’s end. I am bi-polar and fight depression and mania myself.
I have laid down my life for a friend but when will it ever end.”

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