Huntington's disease is a family disease... The person with HD, the children of a parent, the siblings, the spouses, the family members, all become the caregivers in some way. I am the child of a parent who had HD, the sibling to a brother with JHD, and a caregiver. Huntington's disease may affect my family, my life, and my day to day, but because of it I am stronger than I have ever been, and braver for it.
Your video about your Dad was very touching. I know what your going through. My father was diagnosed with HD in 2000 and had to be put in the nursing home 2006.I watched my father loose his battle with Huntington's Disease October 17, 2010. Dad had a living will wrote up years ago saying he didn't want a feeding tube ( he watched his mother battel this disease for 20 years...he seen what she went through and he didn't want to be like that.) so he made a DNR. He got put in the hospital 2 weeks before he passed with pneumonia. Nothing they were doing was helping him and he was aspirating on eveything there were trying to give him. Were he could no longer tolerate liquids the only next step was a feeding tube. Dad was sent back to the nurseing home on assisted hospice care and he lived only from thursday evening to Sunday night. What I watched my father go through in the last 24hrs of his life was horrific. I have a peace at heart knowing he is no longer in pain and isnt going to suffer no more. He is my perfect angel now. My grandmother passed away with HD in 2008.Out of all 4 siblings that my father has they all have HD. I am 22 and have been married to my wonderful husband Ryan for 4 years. We have two perfect baby boys together, Taylor & Luke. I love being a wife and mother more than anything.As of June 11th, 2009 I found out that I have Huntington's Disease. At first I am not going to lie it hit me like a brick wall, I felt like I couldnt breath. I have had a feeling all along that I had it but I really just needed to know.I am seing a great Neurologist at UK in Lexington,Dr.Cambi. I am not showing any symptoms of this disease yet but I am going to fight this and not let it get me down. Me being this young and knowing that I have HD is better than me finding out later in life I believe. I look at it this way, atleast I can TRY to do something about it now, I have faith that one day there will be a cure.
Your video about your Dad was very touching. I know what your going through. My father was diagnosed with HD in 2000 and had to be put in the nursing home 2006.I watched my father loose his battle with Huntington's Disease October 17, 2010. Dad had a living will wrote up years ago saying he didn't want a feeding tube ( he watched his mother battel this disease for 20 years...he seen what she went through and he didn't want to be like that.) so he made a DNR. He got put in the hospital 2 weeks before he passed with pneumonia. Nothing they were doing was helping him and he was aspirating on eveything there were trying to give him. Were he could no longer tolerate liquids the only next step was a feeding tube. Dad was sent back to the nurseing home on assisted hospice care and he lived only from thursday evening to Sunday night. What I watched my father go through in the last 24hrs of his life was horrific. I have a peace at heart knowing he is no longer in pain and isnt going to suffer no more. He is my perfect angel now.
ReplyDeleteMy grandmother passed away with HD in 2008.Out of all 4 siblings that my father has they all have HD.
I am 22 and have been married to my wonderful husband Ryan for 4 years. We have two perfect baby boys together, Taylor & Luke. I love being a wife and mother more than anything.As of June 11th, 2009 I found out that I have Huntington's Disease. At first I am not going to lie it hit me like a brick wall, I felt like I couldnt breath. I have had a feeling all along that I had it but I really just needed to know.I am seing a great Neurologist at UK in Lexington,Dr.Cambi. I am not showing any symptoms of this disease yet but I am going to fight this and not let it get me down. Me being this young and knowing that I have HD is better than me finding out later in life I believe. I look at it this way, atleast I can TRY to do something about it now, I have faith that one day there will be a cure.