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Living with Huntington's Disease

This section is a place to share stories about Living with Huntington's Disease

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The Unending Story
by: Debbie on Wed, Sep 19 2007
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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 neurogical 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 hospitization 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 and not have all the attention, good food, careful inspection for bedsores, 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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  1. Tue, Sep 25 2007
    So sorry to hear your "Unending Story". It sounds like you desperatly need A Support Group. You seem to be caring alot of unnessary guilt be...Read

September 2007

  • My Huntington’s Disease Story - by Heather Dugdale - (Thu, Sep 27 2007)
    I am 24, am experiencing Huntington’s disease symptoms. My family is one of the few in the world who have early onset. I was a Nurse before I got sick. I became a Nurse to look after my HD positive Mom. [more..]
  • The Unending Story - by Debbie - (Wed, Sep 19 2007)
    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. [more..]
  • How to help? - by MJ - (Tue, Sep 18 2007)
    My stepdaughter 37 has HD she recentley took her pet goat and left her husband of 12 years because she said God told her to go to PHX for healing…. [more..]
  • response to susan and2 chidren - by john - (Fri, Sep 14 2007)
    im really sorry to here about your husband and your 2children and your situation its not easy nor is it going to be easy my prayers are with you maybetheywillfind a cure if your children inherit this foul disease by then im powerlifer john ihave huntingtons im sure hd played arole in separation with your husband see if you can find a support group in your area and see if you can get your husband to go if not go yourself learn as much as you can try to get a will made up [more..]
  • deja vu - by Andrew - Malta - (Thu, Sep 06 2007)
    My father was diagnosed with HD over five years ago and he is 65 and not well at all. Late last year, I (male - 39years) got my results from the tests and it turns out I have it as well. [more..]

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