Huntington's Disease Society of America
My name is Michelle. I have seen the effects of HD for most of my life. My mom's symptoms started with a small finger twitch. Over the years she has gotten worse but it has been slow. She would seem to plateau until something very traumatic would happen to her then she would seem to have gotten worse over night. After having to get her gallbladder removed at the beginning of September 2012 and then having to have a shunt put in her head to drain the fluid on her brain from multiple falls due to her legs not working well any longer in late September 2012 she is now wheelchair bound. She is currently at a nursing home where she was staying with my father, but a decision was made to move him out. My father did not start showing symptoms until around 7 years ago. He was always a hard worker and he took the news of possibly having Huntington's disease a little harder than my mother did. My mother seems to have been affected more by the physical aspects while my daddy is more affected by the mental. Since he has been out of the facility in March 2013, my daddy has been living with me. There seem to be more bad days than good lately and he struggles with a lot of activities. The good days are seeming to be far and few between now. It is heart breaking to watch one parent deteriorate in front of you but it is a little more difficult now that both parents have it. I recently at the age of 24 decided to get tested for HD myself. After the long process of being tested, in February, the test came back negative and I am happy to know that my future children will not have to experience the pain that I have everyday when I look at my parents. My dad will have his moments where he is able to focus and I can see the old him is still there. Being his caregiver is hard. At the age of 24, instead of working and going out with friends and things I am taking care of my daddy. He is currently 51 and my mother is 52. My parents tell my sister and I as well as each other that they love us/them everyday. I have not yet been married or had children, but my sister is married and has 2 handsome little boys. My parents may not make it to my wedding or to see my children but I am happy that they have gotten to experience that with one child and that they were not too sick yet to enjoy it. Having both parents with HD makes it very difficult but we stick together as a family and love and support each other.