The fun stops here

Not really. But what do you expect from a blog about how Huntington’s Disease is impacting my life and the lives of those I care about? You don’t get a lolly pop. This is not a feel-good movie.

This is about a genetic screw-up that has been called “the worst disease in the world.” That’s because it takes its time killing your brain, cell by cell. It destroys your family tree like a fungus. The people that care about you suddenly have to care FOR you, and the you they are caring for is someone they ultimately don’t recognize.

HD is not a mixture of Parkinson’s, Alzheimer’s, and ALS, with a dash of schizophrenia. It is its own monster.

My own monster. Is it yours too?

I’m going to tell you about my tale of self-destruction. A play-by-play.

I will not always have my happy face on.

I dare you to come back.

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9 thoughts on “The fun stops here

  1. I’ll certainly be back. I have only 30 repeats in my gene data so am not going to get the disease, but it’s all around me. I escaped by the skin of my teeth. Psychiatrist tells me that my depression is probably all I will get, but that’s O.K. with me since it can be and is controlled by drugs. I am so grateful that’s all I have inherited that I will do anything to help my loving family deal with their own hell on earth. Your quote is perfect in describing HD. Thanks again, Karen Kovacs

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  2. Got my attention!! Although I do not have this monster (or at least I hope not) I have lost many a family member to it. Currenlty in the process of having my younger brother tested. Your words Hit home…I’ll be here!

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  3. Monster indeed! I’ll be back. My daughter (age33) was showing symptoms and tested positive 3 years ago. My heart breaks everyday watching her slowly vanish and knowing what lies ahead.

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  4. My mom just passed away from HD side effects in July. Her repeat was 54 I believe. She was 65. She had been showing signs since she was 48. I don’t know if I have it yet, I’m 41. I’ll be back.

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  5. Grandfather I never knew. Mother, who died 23 years ago. Now brother, who I love so much. And you, my friend. Thank you for writing, and I’ll be back.

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  6. Thank you for this blog. I wish I had found it sooner as I have a lot of catching up to do, but I’m going to do my best to read it all. My heart goes out to you.

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