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  • katrina4384

Please stop saying that about HD...




1. So, this isn't quite on topic, but the one thing I'm tired of seeing..... I'm THRILLED Hollywood is recognizing HD, but my issue is that in several of the plot lines, it seems like suicide is the answer.

Even with HD, there's still worthwhile quality of life to live.

And before I get criticized, when my husband got diagnosed, we both had the mentality of one foot in the grave one on the proverbial banana peel.

Granted, it took meeting a HD Doctor who RADIATES POSITIVITY to change our outlook. Once we made the decision to be positive and realize Nathan still has a lot of life to live. He's done that, live life and continues to do so as positively as he/we can.

So.... I guess what I'm saying is that yes HD is terminal and yes it's robbing my husband of his life, us both of the life we dreamed of having with each other, our kids of their Dad. It's made us realize that there's such a thing as quality of life and that you can still try to live positively.

Before we had this realization, 2 people that we knew, both healthy but died in tragic ways. That's when we also realized that you can drown in the negativity or you can live each day as positive as possible. Hopefully one day, Hollywood will put that in their scripts. (Don't think as I, someone who has always wanted and tried to be an actor I haven't thought of millions of ways to try to write a script to show this...... then again, we do that in telling our story to anyone who will listen....)

2. One thing that people say about HD that I wish people would stop saying is that it skips a generation.

3. Huntington's disease is having Parkinson's, A.L.S. and Alzheimer's disease all at once.

4. Huntington's disease does not affect behavior or emotions. It is just a movement disorder.

5. That if they would only stop having children and then the disease would just disappear. It’s simply scientifically wrong.

6. I wish people would stop saying that Huntington's disease impacts half of the children of someone with HD. Each and every child has a 50% chance of inheriting the expanded repeat.

7. Maybe that children ONLY get JHD from their father; though more likely, mothers have also passed on JHD.

8. People need to stop voicing their emotionally harmful opinions when it won't help the person that is looking for support.

9. That they feel like they are a burden.

10. Sometimes people say that this disease is similar to Alzheimer's disease. It simply isn't like that comparatively. People with Alzheimer's completely forget who they are, where they are, and who the people they love are. People with HD don't have that type of memory issue.

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