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.


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


  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!


  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.


  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.


  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.


  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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