S.O.S. for HD Advice: How to Convince Families to Get Support

After talking on the phone with some of my family members, I felt a range of emotions from anger and frustration to guilt and sadness. It breaks my heart because they are very private people, and they don’t seem like they have the support they need–but nor are they interested in joining a support group. They live far away and I don’t know what to do.

These are my cousins I’m referring to who are about my age, a little older, and sadly, Huntington’s disease (HD) has reappeared: two cousins are showing signs.

One has been showing signs of depression. His wife says he has intense mood swings and has become a heavy drinker; he’s spending more and more time alone and has become sedentary. He makes excuses why he drops things and shakes on occasion. His sister has developed a slight slur when she speaks and her gait is now impaired with what appears to be early symptoms of chorea.

We thought this deadly inherited disease that destroys brain cells, might have ended with their mother, who married into our family. Years before she died, the test had become available, but my cousins chose not to be tested; instead, they have been living under the shadow of HD with fear and dread, keenly aware and perhaps hypersensitive of the possible implications of any little twitch, stumble, or depressive thought. Was that “thing” normal or is it HD? These little ordinary things, which are not pathological for millions of Americans, something most people just dismiss and forget about, are far from ordinary if you have HD in your family.

After caring for their mother until her death at home, my four cousins, got back to their lives as parents and grandparents and pursued their careers. I last saw some of them in person in 2014 at my mother’s funeral, but in my grief, I couldn’t talk long. It was wonderful and comforting to see them in some ways, but also haunting and disturbing in others. I noticed their symptoms. Now, after our recent phone call, I am deeply concerned about them because they don’t want to talk about “it.”

Feeling frustrated, I came across HASA, (Huntington’s Associated of South Africa) a good HD support website that instilled in me, hope—at least for other people—even if they are halfway around the world. And in the USA, where my cousins live, there’s  HDSA (Huntington’s Disease Society of America). It’s good to know that we are not alone.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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