Tracing back the disease

I know the disease has been in my family far longer than I can trace back.  For my tracing purposes I can go as far back as my great-grandmother on my paternal side.  She had HD and had 4 children, 2 boys and 2 girls.  One of the girls had HD (late onset in her eighties) and one of the boys (my grandfather).  My other great-aunt lived a normal life and my great-uncle died young of a heart attack.  My grandfather developed the disease and died when I was about 17 years old.  I wasn’t around him much growing up.  My dad was never very close to my Grandfather due to a violent upbringing and alcohol abuse.  Looking back I think my dad always wondered how much of it was truly my grandfather and how much of it was HD.  I did go to my grandfather’s funeral and I remember that being very hard for my dad.  My grandmother and grandfather had 4 living children.  Out of those four (3 boys and 1 girl) only one was lucky enough to escape the disease.  My dad died this past July (7/14/11) and my Aunt is currently in Hospice and not doing well.  My affected uncle is currently incarcerated.  I was never close with him but I have to wonder if some of his bad choice weren’t due to HD.  My uncle who was lucky enough to escape this horrible disease lives a normal life.  Out of my dad and his siblings there are a few of us “at risk” kiddos.  I have cousins who are all living the same life I am living.  We talk when we can and hope we all escape the evil future we are threatened with.  Then there is my sister (my lifeline in this world).  We are in this boat together.  Paddling, paddling, paddling….

This is just my families story.  I didn’t want to make anyone dizzy reading this and NO there is not a test 😉  All HD family stories are different and this is just mine.

Kim

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7 thoughts on “Tracing back the disease

  1. You have already found my blog, so you know I share your journey. You might want to see my Sept. 16th post, Ode to Birthdays Missed… that’s when I really started talking about my mom and HD, and from there, put in many posts. I have gotten SO many comments, emails, etc from people who have or have never heard of HD. Mom died, in hospice, on December 31st. I wrote a post the night before, and then that morning (Peace). My sister and brother are both positive; I am not. I am so sorry that you and your family have lived with this horrible disease. It’s always a powerful thing to meet others on this path.

    I wish you all the best in your journey and in blogging. 🙂

    • I have to say when I read your post about being there with your mom during those last days it just brought back so much. My dad passed last July and I am still struggling with it. I change my mind all the time about being tested. Right now I just keep plugging along but wonder if the stress of not knowing might be worse than dealing with a positive result. I am looking forward to following your blog. Thank you so much!

  2. Thank you for finding my blog! I am in the processing of getting ALL the information on every neurodegenerative disease, so its taking me AGES! I hope to be able to keep updating new treatments found in labs around the world for HD (as well as other diseases) to keep you informed on developments in the science world. I do have to say though, you are a very strong person for being able to share your experiences with this devastating disease, and I hope that one day in the near future we will raise enough awareness and discover new pathology pathways to be able to find a cure. I wish you all the luck for you and your family, and remember, stay positive 🙂 stress is very detrimental to our bodies. Thanks again!

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