Fighting to Stay a mother after HD diagnosis

I’m a thirty-eight year-old mother of three, with one more on the way, and my world was turned upside down just a week ago when I was diagnosed with a fatal neurodegenerative disease, Huntington’s Disease. Everyone seems to call it HD, so I will, too.

HD gradually robs its victims of their cognitive abilities and their coordination, to the extent that many of its victims end up non-verbal and having difficulties swallowing.   People suffering from HD typically end up dying 15-20 years after onset, typically of secondary conditions such as pneumonia from aspirating food.

But as a mom, what scares me the most about how HD would affect me wasn’t the dementia or the physical problems:  it’s the personality changes that come along with it.

As HD progresses, reduced empathy is extremely common, along with irritability, angry outbursts for no reason, and lack of interest in the world and people around them.  Anxiety, depression, and other psychological disorders are also extremely common.

As a mother, these symptoms are devastating to me, because right now, while I’m far from perfect, I am a caring, sensitive, intuitive, compassionate parent.   Being in tune with my kids’ emotional and developmental states is so integral to who I am as a mother, and it is unbearable to me to imagine myself gradually losing my ability to feel empathy for my kids and care about what is going on with them.  I’ve seen too many posts from family members on HD Facebook groups about how they miss their still-living relatives. Some shell of them is still there, but that old relationship is long gone.

I’m also worried that my younger kids will only remember my post-HD self, whatever that is, and nothing else.

So I’m creating this blog for my children to discover sometime in the future.  I’m hoping that if they are feeling lonely and missing me, or if I’m acting strange and disturbing in their current reality (or dead), that this blog can at least give them some slim connection to the me that existed before HD. I want them to know that no matter how much my personality has changed in their current reality, that the reality is I love and cherish them and I wish I so desperately that I could still be there with them, unmarred by HD.

Because I do love you all so, so much!   It is unbearable to me to look at your beautiful, innocent young faces, and know that HD is going to wreak so much havoc on our family, and there is nothing I can do about it.  I feel so much rage and so much sadness because you don’t deserve these these changes that are looming — none of us, do!

I wish more than anything that we could continue to be  a normal family with normal worries, and I feel so much anguish that things are going to be so different for us!

Much love from your mother!




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