My Sister Has Huntington’s Disease

Kari with her sister AnneMy 51-year-old sister has HD—Huntington’s disease. She was willing to be on The Unexpected Caregiver radio show, but was nervous—not about telling her story, but about having a microphone in front of her! Anne has a large personality, but doesn’t like being singled out.

HD is a degenerative brain disease. It is unkind and inherited. Our mother had it. She inherited it from her father. It does not skip generations and does not favor one sex over the other. Anne has four children. They are at risk for HD. If none of her kids have the defective gene, then the disease stops with that generation and is finished in that family. That is our prayer.

There are about 30,000 cases of HD in the U.S. The best way I find to describe HD is that its victims look drunk—unsteady, jerky movements (from the chorea), unstable emotionally and behaviors that are not rational. Anne suffers most from the mood and behavior issues. And yet, she has a lot of humor and spirit.

She lives in assisted living only because her husband of 30 years left her. I am now on her caregiving team. She shares her story tenderly and openly on The Unexpected Caregiver, August 16 at 11 a.m. Central (repeated August 19 at 10 a.m.).

If you are a caregiver and need emotional support, don’t hesitate to contact me. I have been both a professional and family caregiver, and understand the struggle to maintain personal sanity and yet be a loving caregiver.

I am proud to call Anne my sister. I don’t think I’ve ever loved her more.

Categories: Caregiving Issues, The Unexpected Caregiver Radio Show

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